Hello, friends,
I hope everyone is doing well. I wanted to let you all know that I am not using this account anymore, because the email associated with it ...Read more
Hello, friends,
I hope everyone is doing well. I wanted to let you all know that I am not using this account anymore, because the email associated with it was hacked. I have opened a new account and all my future posts will go there.
Here’s the new page: https://www.heart-valve-surgery.com/journals/mystory/alinawilson
This is a legitimate post: I was still logged in to my old Heart Valve Surgery page on my tablet, so I am hoping this post will notify those who subscribe.
Thank you!
Happy summer and much, much health to everyone!
Hard to believe that five years ago today I was getting a new heart. They call it an open-heart surgery (OHS), but for all intents and purposes, it was really ...Read more
Hard to believe that five years ago today I was getting a new heart. They call it an open-heart surgery (OHS), but for all intents and purposes, it was really a rebuilding of my heart: a Bentall graft implanted in the place of my aortic valve, root, and ascending aorta; an aortic arch endarterectomy (repair), several endarterectomies of several main arteries in my heart, and four by-passes. My surgery is documented here: https://livingwithfh.blogspot.com/search?q=day+1+to+8 .
Just like every year on this date, I will read the surgery report and just wow myself into stupor. How much can a body take? Hours on the heart-lung machine, circulatory arrest flirting with the limit allowed, heart attack following the surgery, neuropathy for years after that, closed up by-passes years later, pump head that’s lasted now into my fifth year … But also, how brave and certain and a little crazy can heart surgeons be to have the courage and the firm hands to do it all?! The depth of human knowledge and curiosity and bravery to push boundaries never cease to amaze me.
The surgery was still the hardest part of this journey, I won’t lie to you. Just the thought of what the body went through, the risks, the pain, the sheer demolition of every nerve I was ever made of. Everyone told me right after surgery that my body got hit by a semi and I need to take it easy, and that was not a joke. Like I said before; I felt like my body went to war. And it lost.
But also, the faith, the amazing knowledge of the Utah Valley Regional Cardiac Surgery team were humbling and awe-inspiring, to say the least.
The recovery, little by little, revealed new surprises every year. Every day. I had to learn how to function with neuropathy in my left hand and leg first, as well as how to breathe with neuropathy in my diaphragm, when my lungs were not getting a full load of air. In time, they all cleared up except for my pinkie and ring fingers – they are still full of needles.
I had to learn how to exercise again, a little bit at a time, after two bouts with Cardiac Rehab, a year and a little bit apart. Like a vet that comes injured from war and has to learn how to walk again, one small achievement at a time, I had to learn things and learn my new body. I was amazed how much it felt like I did get a new body, when in fact only the engine was replaced.
I had to learn new ways of monitoring my health, like managing my INR – and how not to freak out every single time the numbers are too high or two low … This, too, this scare and worry (because it’s still here and it’s constant), must be your friend, because it’ll never leave you … You just need to tell it some days: ah, well, we’ll try better tomorrow! Just chill!
Same goes for not freaking out when you accidentally cut off a piece of your cuticle while chopping veggies and then you can’t stop the bleeding. You learn about the amazing power of coagulating bandages that grow a scab for you when your body can’t.
You have to get used to new blood pressures and pulses. New, more difficult ways to get an accurate echo of your heart or even a good cath – because that Bentall graft is in the way. Catheters have a hard time getting through it to look at the really small vessels and it casts a shadow on your valve and heart and they’re never too sure what they see anymore … Much trust.
All such memories now, but also all part of the new me and new normal. You have no choice but embracing the new-ness. It is the new you. It is the better you. I feel different today and in some ways I feel like I exchanged old problems for new ones. But, believe it or not, the new ones seem more manageable than the old ones. My aortic valve is not two thirds shut anymore. My LAD is not 99% occluded anymore. My stamina for lengthy exercise, albeit slow to moderate, is much better.
Some things are different but still there, like the chest pain and the neck pain from the stenoses in my carotids. A lifetime of echos, ultrasounds, and MRIs is still the norm.
Although I took things easily right after surgery, little by little life became more normal: I started travelling, first by car, then by plane. Within a couple of years I found the courage to fly to Europe. I have been there twice since the surgery. I have been on two cruises (before Covid, obviously) and several times to Canada. I also traveled across the country by myself several times for work. It was, again, like learning baby steps. But it is possible. I can tell you I am in touch with every sensation in my body. If something is “off” I feel it right away. This has not stressed me as it’s made me more curious to learn more.
I have also learned so much from other patients. I have made friends during this journey that I would not have made otherwise, people like me that share freely, honestly, vulnerably their own journeys. Their stories make me so much stronger and make me believe that there is so much strength in us. All I have to do is learn courage from them and find it in me. We all have it. Of that I am sure.
I have also become so much more grateful for every good day. Every day when my tiredness is not too much, I am grateful. I have become more grateful for my family. Every day that my husband does something for me to help me through – I bless him and people like him, those who truly have helped me through this, without whom I would not be here today. Of that I am also sure.
For those out there contemplating whether they should have OHS, I hope you find the strength to do it, and the faith that it can improve your life. I also hope you find the strength in your family and a great team of doctors to walk hand-in-hand with you through this journey. All I know is: you are never alone. You are the main hero of your destiny, of course, but there is a web of little helpers out there that will carry you through. To all of those little elves, starting with my surgeon and ending with my husband, my tireless caregiver – I owe them my life. And I humbly thank them.
Happy journey to all and Happy Heart Month!
"In the end, when we look at our life, the questions will be simple: Did I live fully? Did I love well?" (Jack Kornfield) "The proper function of a man is to live, not to exist." (Jack London)
Bradley Dunn Happy 5 years... Time flies after surgery!!
Rita Savelis Dear dear amazing Alina, Happy 5 years! with much love and admiration from Rita
Shannon Gray Beautiful and amazing, Alina! Happy 5 years, my dear friend!
Marie Myers Wonderful post, and Happy Anniversary!
Adam Pick Congrats Alina! Love your attitude! Thanks for sharing!!!
Barbara Wood Wow! Congratulations Alina! Wonderful post.
In some ways, 4 years seems like yesterday. And in most of others, the past 4 years since my open-heart surgery feel like a lifetime. I am not the same person ...Read more
In some ways, 4 years seems like yesterday. And in most of others, the past 4 years since my open-heart surgery feel like a lifetime. I am not the same person I left on the other edge of that precipice. I never will be. That person is in my past, maybe even dead, and this new metamorphosed person is here now, scars and all, to tell the story of what was and what is here today. I do know one thing for sure: if it were not for that open-heart surgery that old person would not have made it alive to today. And there would not have been a new one.
Every year, I recap what happened: the aortic arch was repaired and cleaned out from the multiple levels of calcification; the ascending aorta was replaced with a Dacron graft; the aortic valve was replaced with a mechanical On-X valve; four coronary arteries (including the LAD and OMB, some of the larger ones) underwent endarterectomy (this is plaque removal) and bypasses. A week after the big surgery, the heart attack followed.
Three months of cardiac therapy and pretty much bed rest followed. Three more months of not being myself, tired all the time, having visions, tinnitus, speech lapses, left arm and left leg neuropathy, labored shallow breathing and sleeping sitting up followed after that. After about a year, I started getting used to my new normal which still involved some degree of all these. Also after about a year, I started flying again. After about another year, I started flying by myself. One baby step after another, I made it to today. I never count the days that passed except on my anniversaries. I am just glad I am here and I get to write this. I am grateful for every breath, every tic-toc, every full minute that slips in the past.
New symptoms every so often, old symptoms getting better or disappearing, old drugs and new ones are my every-day routine, but then again – they were part of my old life, too, so not much to get used to there. Some old issues disappeared but I traded them with new ones.
New and old tests show that my valve is doing great. Most of my bypasses are closed because the cleared arteries are working fine on their own. The bottom part of the heart is a little weaker than the rest of the heart but with an ejection fraction of up to 65% I am almost as close to the old ejection fraction as ever (it was 70% before the surgery). The blood pressure continues to be very atypical, in various ways, but there are yet more tests for that to follow. Some of the neuropathy still exists in my left hand but my leg is 100% better.
My breathing is mostly better, except with exertion. All in all, I am lucky. I work full time; I travel anywhere and any time I can. I really cannot ask for more. The best present I was ever given in my life was these full years after that surgery! Every single minute of every one of them.
Every year, on this date, I read my operative report and beyond the awe of what a body can get through and survive I find at least one thing that makes me chuckle.
This year, I found these statements which refer to a type of surgical clamp. But if you’re not in the know … they sound hysterical, I think: “The bulldog was released and hemostasis was satisfactory. The bulldog was reapplied.” That just made me laugh out loud. Just the visual of the bulldog, the dog … who “was released …” Must have been a friendly bulldog, since it didn’t kill me.
Looking forward to tomorrow and every day after, but I have no expectations. Just enjoying every minute of every breath and being filled with gratitude.
One baby step after the other – the only way I know how to do it …
****
Heartfelt best wishes to everyone just starting this journey now. I wish you the strength to keep on and I wish you best teams, at home and in the hospital, to help you through it.
To all my fellow classmates from 2016 - I hope you are all well and continue to live fully. I am honored to be among all of you.
Much health to all!
Kim Owen What a powerful story. Blessings sent to you.
Rose Madura Great post. Well said. Glad you are doing so well.
Adam Pick Umm.... "The best present I was ever given in my life was these full years after that surgery!" That ... Read more
Adam Pick Umm.... "The best present I was ever given in my life was these full years after that surgery!" That quote just blew me away. So transformative. Thanks Allina! You are wonderful!
Shannon Gray Oh Alina! Powerful and beautiful! I am blessed to call you a friend. Thank you for your anniversary ... Read more
Shannon Gray Oh Alina! Powerful and beautiful! I am blessed to call you a friend. Thank you for your anniversary post.
Rita Savelis Dear, dear Alina. Always makes me feel good to read an update from you. Thank you. xoxo
Marie Myers Happy Anniversary! I followed your story during my anxious pre-op days...
Susan Lynn Happy 4th Anniversary! Great update, Alina!
Kate Watson Happy Valverseary Alina! I still remember your surgery and recovery very well, and how you handled ev ... Read more
Kate Watson Happy Valverseary Alina! I still remember your surgery and recovery very well, and how you handled every moment of it with grace and positivity. Much love to you! So grateful we met on here.
Wanda Mroz Alina you write so well. You are amazing. You and Barb are my heros! I hope someday to meet you bo ... Read more
Wanda Mroz Alina you write so well. You are amazing. You and Barb are my heros! I hope someday to meet you both. Although no heart surgery is small,what you two have gone through is much more than I... you amaze me with your strength and courage. So glad you are doing well and living your best life. Many hugs and wishing you many more healthy years to come. 💞💞
Alina FH Thank you, everyone! Continued health to all of you! 💜💜
Phyllis Petersen Great to hear you are doing so well! Happy Anniversary and wishing you many more years of adventure!
Hello, wonderful folks … My login for this site has not been working all year – till now … I figured I’d post an update and tell you all that I have ...Read more
Hello, wonderful folks … My login for this site has not been working all year – till now … I figured I’d post an update and tell you all that I have been OK. I have been keeping up with your journeys, especially my heart friends from the 2015-2016 classes, even outside the login. I am always amazed by everyone’s resilience and perseverance and by this miracle of life that we have all been given not one but at least two chances at …
My year’s been extremely busy – with lots of work (but I work from home, so it’s stressful but not very physical), and lots of trips – for fun, for family, for work … I am really amazed every day how “normal” life has just become three years after OHS: eat, drink, take meds, measure BP and pulse, take INR once a week, exercise, rest, see the cardiologist 2-3 times a year, repeat …
The latest report on my heart has been pretty incredible: all my valves are working correctly and the heart muscle has the right kind of squeeze (I guess ejection fraction is back to where it would need to be). This last one was a concern for a while because I had a heart attack a week after my OHS that knocked the EF from 70% to 55%.
There is trivial regurgitation on a couple of valves, but both the cardiologist and the surgeon have said those are not of any concern at this time. I still get symptoms of shortness of breath and fatigue, but they are not as often as before the surgery. My blood pressure is still very odd – at time very high, and the two numbers are very far apart. But this has proven to stump just about anyone who sees me which also causes me to wonder: are these numbers really that important?! I do feel flushed and light-headed when my blood pressure is high, so I guess there is something going on, but so far, I have not done anything for it. I just take it easy when this happens. Since I moved down from the high altitudes of The Rockies into the hills of North Carolina, my stamina for exercising has improved a lot, along with the frequency of my symptoms and my breathing.
For those of you who remember, I also had a quadruple bypass and my ascending aorta replaced with a graft in addition to my aortic valve at the same time. These are all because of my genetic disease (Familial Hypercholesterolemia) that damaged my arteries and my valve. The damage of this disease still continues to happen (my abdominal aorta is narrowed down to a 0.6 cm diameter) and I am still working with the cardiologist to watch the progression of this. But as far as they can see on the annual echo, the heart itself is doing fine. They will follow with a heart cath to see the blockages in my heart but not more than about every 5 years. Outside of this, they are just guided by my symptoms: if they become worse or occur more often, then they will to the cath sooner.
Given everything I went through with my 20+ of cardiovascular disease, many years of valve disease, the surgery, the heart attack … I am truly humbled that I am where I am today …
I am really grateful for everything that has happened so far, for the second lease on life that my surgeon has given me, for the care of everyone in my health team, for my job that provides insurance so I can afford proper care … I am also grateful to all of you who are so honestly sharing your own stories from which I learn and from which I become stronger myself …
What I have found during this journey is that just about the least helpful thing anyone will tell you when you begin this is that “you can do it”. It’s that “it’ll be all right” and “you got this”. THIS … is a big deal. I think you should be freaked out (a little) and you should fight for it with all you got! But I also think you should treat it with the objectivity and resilience you treat anything else of importance in your life. Ask, get informed, advocate for yourself, if something doesn’t make sense, look for a second opinion, ensure you rally a strong team of people around you, and then go to battle. What I have learned is that we cannot do this alone. But with the right help and hands, the medicine is there for us to get better. From finding the right resources to back you up in your journey, greater peace will come.
Another thought: your journey is yours – never compare your path to anyone else’s. Don’t get discouraged and just take everything that is happening to you at face value, at you own rhythm and pace: one foot in front of the other, just like you do with everything else … Just like you don’t run as fast as other people (or as slow), you don’t live every day like anyone else. Heart disease is the same. Each of our stories is special and priceless in its beauty and uniqueness just like every one of us … And there is no one at the end of the track with a timer, so there is no competition here. If you are of competitive nature, leave that trait at the door when you enter this realm. Living in the moment, assessing every milestone for you, in your own frame of values is what will give you strength and juice to keep moving forward.
The best of luck writing your own stories! Thank you for the courage and the honesty you show when you share them with all of us. It’s good to be back and officially keep up with everyone.
Much health!
Catie B A beautiful post, Alina--I'm so glad to hear you are faring well! :)
Shannon Gray Beautiful, Alina! Truth, truth, truth... love it and you. So thankful for this site to have brought u ... Read more
Shannon Gray Beautiful, Alina! Truth, truth, truth... love it and you. So thankful for this site to have brought us together.
Amy Steele Thank you for your honest and realistic post. You're so right about our journey being our own and no ... Read more
Amy Steele Thank you for your honest and realistic post. You're so right about our journey being our own and not to compare ourselves to others; good or bad. I talk with many open heart patients every month and tell them to be kind to themselves, to expect ups and downs, and to not ignore anything that feels wrong or 'off'. I wish you many more years of good health!
Rita Savelis Dear Alina - you are special and priceless in your beauty as is the story in your post. Your wise wor ... Read more
Rita Savelis Dear Alina - you are special and priceless in your beauty as is the story in your post. Your wise words always resonate with me. Thank you for being there. xoxoxo
Enrique K Hi Alina, great news and glad to hear you are doing well. Take Care and best of luck with everything ... Read more
Enrique K Hi Alina, great news and glad to hear you are doing well. Take Care and best of luck with everything!
Wanda Mroz Truer words were never spoken. I was told early on that there would be good days and bad. Two step ... Read more
Wanda Mroz Truer words were never spoken. I was told early on that there would be good days and bad. Two steps forward and one step back. Glad to hear you are doing well. Hugs,..,💞🤗🙏🏻
I know the question of "what type of valve should I choose" comes up often for folks who have just been presented with the option to have a valve replacement ...Read more
I know the question of "what type of valve should I choose" comes up often for folks who have just been presented with the option to have a valve replacement surgery. I had the opportunity to tell my story about my journey when I had to make that decision and the American Heart Association published it this week. Feel free to have a read here: https://www.ahajournals.org/doi/10.1161/CIRCOUTCOMES.119.005523
I hope it will be helpful! (the article is free and you do not have to have a login to read it)
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Tracy Fallu Wonderful article; thank you for sharing.
Kate Watson That’s so cool you got to share you story with AHA! Thanks for sharing with us. It always fascinate ... Read more
Kate Watson That’s so cool you got to share you story with AHA! Thanks for sharing with us. It always fascinates me to hear why people make the valve choices they do.
Willie Radl Great story. I ended up going mechanical as well. Similarly I reached out to a high school acquain ... Read more
Willie Radl Great story. I ended up going mechanical as well. Similarly I reached out to a high school acquaintance who I knew had heart surgery as a child to ask about it and found out that she had 6 surgeries already and had been on coumadin for 16 years. She basically told me she didn't even think about it anymore, that was very reassuring to me knowing she lived a very normal life.
Rita Savelis Thank you Alina. Cool story. Great writing, as always, so clear and concise and honest and helpful. Y ... Read more
Rita Savelis Thank you Alina. Cool story. Great writing, as always, so clear and concise and honest and helpful. You should have a regular AHA column. Mechanical valves often get a bad rap. Yet so many live normally with one (or two, like me).. It's nice to read an honest account about how a valve decision is made. xoxo
Fay Kozas Alina, this is an honest, well-written article. It's great that you are happy with your choice of va ... Read more
Fay Kozas Alina, this is an honest, well-written article. It's great that you are happy with your choice of valve. You are a beautiful person. Thank you for sharing.
“Up and at'em!” - is what my surgeon said to me the day I came out of ICU, two days after my surgery. Three years ago tonight I came out of my open heart ...Read more
“Up and at'em!” - is what my surgeon said to me the day I came out of ICU, two days after my surgery. Three years ago tonight I came out of my open heart surgery with a new mechanical aortic valve, a new aorta, a repaired arch and four bypasses on four major arteries in my heart. About a week from that day, I had a heart attack while laying in my hospital bed waiting to be released.
But two days after the surgery, the surgeon said that once I would leave that hospital the sky will be the limit for me (“It's up and at'em from here on out!” - he said). Well, as those of you who have been through this already know, it takes a lot more work than this to be “up and at'em” again. But also as many of you know, it's not impossible.
I have been so blessed to have three more years added to my life, three years that now, looking back, I am not sure if I would have had, and not sure what they would have looked like if it were not for this surgery. I have had set backs and doubts that my heart is fine, I have felt and will always feel like a permanent heart patient, I still have regular appointments, take drugs and still manage the complications from the surgery daily. But … I have also lived a full life, too. I have worked full time since three months after surgery. I have traveled, I have camped, and climbed mountains, I have played with my nephews, and went on my first cruise. I have seen The Grand Canyon and walked Venice Beach and Sunset Boulevard in LA. I walked the streets of New York City in 100F weather for four days straight and did not pass out.
This past year, I landed back in the cath lab, for my new cardiologist to try to diagnose my angina and shortness of breath. Then, I landed back into cardiac rehab from there, which didn't help much this time around, except for giving me the confidence to exercise, angina and all. But I have had a good third year, too: this past year was the first one when my husband finally “freed” me to travel by myself. I jumped on a plane by myself and went on four business trips, one of them for two weeks all alone. No one to ensure I breathe in the middle of the night, and no one to help me store my luggage in the overhead bin.
What I know for sure now is that the journey is long, but it's so sweet and worth having. Every day that I see the sun, every flower that I see sprouting in my yard every spring, every humming bird that comes and visits our feeder in the summer – I am grateful I get to see it all and enjoy it all. Every morning that I open my eyes and I feel the rise and fall of my breathing chest, every click of the mechanical valve that I hear, I am in awe of how amazing this life and medicine is and how humbled I am that I have benefited from it all. I am amazed at how resilient, we, as a species, are, and how much power to fight and rejuvenate we have.
I am here to tell you that this journey is ultimately so worth taking. I know it can seem daunting if you are coming just now to the edge of what seems to be a bottomless precipice, right before you have to face that cold room where your heart will change forever. But trust me: the desire you have to live and get better, the power and energy you are equipped with to fight through any setback are stronger than any fear you might feel right now. I know you might not see it, but trust me – it's there.
Whether you do it for your kids, or for your significant other, whether you do it for yourself, or your pet, whether you do it so you can have one more taste of your favorite food or to cross those 100 things on your Bucket List, whether you do it just because you're stubborn and want to kick some heart disease butt (like I am), or for those two cute Canadian nephews that you want to see grow up and get married one day (like I did), whatever your reason – know that you will go through it and see your life's dreams come true one day. Just keep at it. Pray. Trust in you and your team and give it all you've got. When you wake up on the other side of that precipice you'll be glad you jumped and the beautiful journey will just then begin!
Nowadays, medicines, doctor appointments, and all, I am happy to be living and to be looking forward to more life. I am glad and grateful that what was once very wrong with me is patched up to the best of our abilities and will allow me to be here, to be present, and to give myself to this life.
After three full years where I have had to re-learn who I am really and I have had to re-learn to be grateful and patient, I am finally able to say that “up and at'em” it is.
Onward, you all! May your journeys be smooth and rewarding. May your gaze be steady and your soul open to receive healing.
Happy anniversary to all of you in the 2016 class that supported me and carried me through my darkest days after surgery. Your sharing your stories with me has been a precious gift for which I am forever grateful. I wish all of you, in every stage of recovery and healing, much health and many blessings ahead! And for those of you just beginning: trust and look up! The light is yet to come...
L Brown Just want to say Congratulations on your 3 year anniversary. So glad you are "up and at'em...very enc ... Read more
L Brown Just want to say Congratulations on your 3 year anniversary. So glad you are "up and at'em...very encouraging..
Catie B Lovely, Alina! So good to hear the way your journey continues. I love that you've been able to travel ... Read more
Catie B Lovely, Alina! So good to hear the way your journey continues. I love that you've been able to travel so much.
Tracy Fallu Happy Anniversary! May you continue to enjoy life!
Barbara Laurie Class of 2016 Alum💕💕Love your post Alina. Well said friend! I can’t believe it’s been 3 yea ... Read more
Barbara Laurie Class of 2016 Alum💕💕Love your post Alina. Well said friend! I can’t believe it’s been 3 years! God Bless! 🌻🌻
Rita Savelis Happy, happy 3rd anniversary, Alina, from someone in the Class of 2015! Thank you, as always, for tak ... Read more
Rita Savelis Happy, happy 3rd anniversary, Alina, from someone in the Class of 2015! Thank you, as always, for taking the time to describe so honestly and eloquently and beautifully what it's really like, (such as how surgeons often react a few days after OHS)... Take care. Keep traveling (alone and in company), and keep writing. xoxoxoR
Shannon Gray Happy tears are just a flowing.... beautiful, Alina! And so very thankful our paths have crossed beca ... Read more
Shannon Gray Happy tears are just a flowing.... beautiful, Alina! And so very thankful our paths have crossed because of our heart journies.
Dan Vechiola Great story Alina! Congratulations! Thanks for sharing!
Kate Watson Happy anniversary, fellow 2016 graduate! Thanks for alway sharing your beautiful, inspiring words. I ... Read more
Kate Watson Happy anniversary, fellow 2016 graduate! Thanks for alway sharing your beautiful, inspiring words. I'm so happy that you are enjoying such a full life. Always grateful for your support and friendship.
Susan Lynn Thanks for sharing your inspiring story, Alina! Happy 3rd Anniversary!!! ❤❤❤🍾🥂
Fay Kozas Alina, thank you for sharing. You are a true heart warrior and a great writer. I am truly touched by ... Read more
Fay Kozas Alina, thank you for sharing. You are a true heart warrior and a great writer. I am truly touched by your writing....the details, I can see it all in my mind's eye. And, Happy Anniversary and many, many more!
Alina FH Thank you, everyone, for all the kind words. Much health to you all in your own fierce, courageous jo ... Read more
Alina FH Thank you, everyone, for all the kind words. Much health to you all in your own fierce, courageous journeys! 💜💜💜
Hi, all,
I am not sure if someone else already posted this here (I cannot find another post), so if this is a repeat for some of you, I apologize. For those ...Read more
Hi, all,
I am not sure if someone else already posted this here (I cannot find another post), so if this is a repeat for some of you, I apologize. For those of you who check your own INR at home and using a Roche CoaguChek meter, be aware that this massive recall is going on at this time for their test strips: https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm624904.htm
I hope this is helpful.
Be well and safe!
Roche Diagnostics issued voluntary recall of certain test strips used with CoaguChek meter devices; patients affected by the recall should seek alternative methods for testing.
Willie Radl Thanks for posting, I tried calling in my numbers today and apparently my doctor paused my account du ... Read more
Willie Radl Thanks for posting, I tried calling in my numbers today and apparently my doctor paused my account due to this reason. It was my first test with the in home machine too. My reading was a little high on the machine though so I'm glad they're getting it fixed
So, I am back in cardiac rehab – two years and 6 months after my surgery. It feels odd, and a bit tardy, but I only have so much energy to argue with my cardiologist. ...Read more
So, I am back in cardiac rehab – two years and 6 months after my surgery. It feels odd, and a bit tardy, but I only have so much energy to argue with my cardiologist.
The reason he sent me back is because I still have shortness of breath, I still have a chest squeeze and a pronounced numbness in my left arm, shoulder blade, and collar bone when I exercise even “a little bit”. Or whatever they consider a little bit. He doesn't think this is valve related, although the On-X mechanical valve I have is leaking a little bit. But not enough to make a difference in symptoms, he says. But enough to cause my large gap between my systolic and diastolic BP. He sent me back because he thinks the symptoms come from the fact that my smaller arteries are still clogged up with cholesterol (which is genetic) and my heart won't grow new vascularization unless it's very active. Since I am limited by my symptoms, I cannot exercise enough to grow new blood vessels, therefore the need for cardiac rehab, to recondition my heart and also monitor what it's going on when I do exercise.
And this is where the disconnect happens. I have just ended my first week in rehab (the second time around, like I said). This time it's a different state, facility, medical system than before and it is by leaps and bounds different from how my first experience was. This time, it feels like just going to a gym all by myself, with the only difference being that there are spectators around me watching my exercise. But that is all they are doing. Almost.
They do take our blood pressure when we walk in and when we walk out – and we need to record it in our folder ourselves. But they don't take our blood pressure as we exercise (they did the first time I was in rehab – several times, in fact).
We do wear a monitor that we hook up to our chests ourselves when we walk in (I pray every time that I do it right, but who knows?!). And they tell us that our heart “looks fine” because the monitor talks to their computer during our exercise. They said they would tell us to stop exercising if they see any EKG modifications. But it's like 10 of us and one nurse looking at the monitor and doing 10 other things, so I am not sure how they would be able to catch the modifications as they happen. She doesn't seem too focused. When I first went, we had an assigned person who would monitor just us the whole time we were exercising.
We have to pick our own machine that we want to exercise on, and we need to use that machine (treadmill, two kinds of bikes, elliptical machine) for 45 minutes. How fast, or steep we go is our call, but they do want us to reach our “maximum heart rates” which they base on our weight-height-age. After 45 minutes, we all go to the strengthening and relaxation room and exercise in a group as we all follow the physiologist in strengthening exercises for 20 minutes before we slow down during the relaxation time, which is roughly 10 minutes (that is a total of an hour and 15 minutes, if you didn't count).
During this whole time, you have to write down in your folder your own numbers: how fast you walked on the treadmill, your speed, your length of time and your RPE (Rate of Perceived Exertion) – in other words “how strenuous” you think your exercise was. They only take your blood pressure when you walk in and when you walk out, so when you are rested. They tell you what the highest heart rate was during your cardio exercises and you write that yourself in your folder. They ask you to take your own pulse at the end and record it in your folder (thank you, Apple watch! - almost everyone in the room is counting theirs themselves).
This was all done for me by the physiologist, and my blood pressure was taken 3-4 times during the cardio exercising the first time I was in rehab.
This past week, the physiologist I worked with the first day said there “is no need for them to take my blood pressure during my exercising, because by looking at my history she does not expect my blood pressure to drop.” She said that she expects it to rise with exercise, which is perfectly normal, but not drop. I was dubious, so dubious that I was speechless and didn't argue that nor told her about my jumping blood pressure for no reason at all. I also did not tell her about the regular huge gap between the BP numbers (which is my number one concern) and which I would like to see/ understand whether it can be cleared by exercise.
The second day I went in, the second physiologist asked me if I have questions and I told him that I was not expecting to be monitored so little in a program that is branded as a highly medically assisted one. I told him that the first time I was in rehab, my blood pressure was monitored closely and the numbers were not good, but they did show that my heart is not happy when it's pushed too far. I also told him that my cardiologist told me they would do a stress test before I would even start rehab so they'll know my limits, rather than tell me what my limits are based on my weight, height, and age. Given the condition of my heart, my limits should be lower. They never did a stress test before I started this. They said, however, that they based my limit on the stress test my cardiologist did in March (5 months ago). But even that one was different than the one they had done in December last year (9 months ago), so my heart is always changing, it seems. Don't they want to know what it's doing now?! Apparently not.
He apologized hurriedly and he said “oh, we can do the stress test any time during the program, no big deal.” But for now, he said, let's try to get your heart rate at least above 90 (my goal was 119, apparently, based on the last stress test they had access to see, but he wanted it at least above 90 given that the first day I was there it was only 86). Although I did put an RPE of 9 the first day when I exercised on the bike, indicating that I was very tired and breathless during that day, had my chest squeeze, he still wanted me to do more the second day.
So, I tried. I also told him one of my biggest concerns is my blood pressure and I am surprised that they do not monitor it during my cardio. He said he will monitor it that day closely. So, with me pushing myself and him taking my pressure, off I went.
My blood pressure climbed up to 155 over 55 (yes, the diastolic is always that far from the first number), and at that point I was out of breath completely. He said I was not at 90 yet, I was still at 86. I told him it's hard to really make my heart rate go really high because I am on atenolol, too, which is designed to keep the rate low. He then eased up and let me slow down. OK. Now, they got what they wanted: they stressed my heart out enough that I was a 10 on the RPE scale. My rate was 89!!
My left arm, shoulder blade, and collar bone were completely numb at this point – this is when he was really sold that I should slow down. And then, all of a sudden I started feeling very dizzy, very light headed and like I was going to faint. He took the blood pressure again, it was 142 over 50. Two minutes later, if that, he took it again: it was 106 over 34! So, in like 5 minutes, it went from 155 over 55 to 106 over 34. I thought I was going to faint!
They asked me if I should take a nitroglycerin, and I told them that usually I just wait it out and all this discomfort goes away on its own – so they left me be.
I didn't do the strengthening exercises that day. I just got some water and waited for my balance to come back so I can drive back home. I felt horrible the entire rest of the day.
The third day I went back, I took it very slow: my heart rate went up only to 79 (it is usually between 54-60 when I walk in), and I did reach an RPE of 7 on that third day, so I exercised within my own comfort level. I do not want to try to reach their weird goals because those are not MY goals! I know I am not a doctor, but I feel like my heart will never be an athlete's heart – this is not out of laziness and hypochondria, but it is out of being in touch with my body and knowing what it can and cannot do.
I still believe a stress test would have given them a more accurate picture of where I am today. Now. I flunk every test they give me – they all have a goal and I come way under that goal but my symptoms start way before I am anywhere near that goal. And when I do exercise, normally, on my own, I never push myself as hard as they always push me on the treadmill of a stress test (my goal for my age/ weight/ etc is 150 BPM – I have never been able to reach that). And even with me not pushing that hard, the symptoms are there.
It was the first time in rehab that they diagnosed my weird BP, and when they found that sometimes my MAP (Mean Arterial Pressure) is too low. And when this happened, I would start seeing symptoms, too – so the symptoms were heart related. This time, no one else in the room gets their blood pressure measured during their exercise till they actually can no longer do what they are doing. Definitely a different approach, maybe not as proactive as the first crew I was exposed to.
So, not so sure about this second go-around of rehab. I feel like they are not monitoring us closely enough to really understand each of our needs – had I not spoken to the second physiologist, they would have never found out about my jumping BP during exercise because the first person said “there is no concern that it would ever drop.” Now, he said (promised, even) that he would take it during my exercise every time I go in. He did tell me he would push me harder as time goes by but honestly, after the episode I had this week I wonder if that's even safe. Maybe the limitations in my heart will never get it working as hard as the doctors need it to work for the blood vessels to grow again, or the circulation to improve?!
I used to encourage people about going to rehab, because my first experience there was really good; it really gave me the confidence I needed after a very involved surgery that my heart CAN and will get stronger again. But now I understand why some people saw no value in theirs – because every place is different and some places are really not working with you to understand, explain, and monitor you so you know what is happening with your heart. Some places are really just a gym with heart monitors. But those who know me know that I'd rather know more than less.
All I can say is: always speak for yourself. If something does seem off, speak up, ask questions, be curious, know your numbers, challenge them – they owe you at least an explanation, even if they're not willing or able to make a change. At least that.
I hope all of you in rehab see value and find strength in it. Those going in for surgery: best of luck and smooth journeys! Everyone awaiting for that date to go in – may you find the perfect team and may God help you cross that bridge and find health on the other side. Everyone who has been recovering for a while, continued improvement and enjoy those milestones when you reach them!
Much health to all!
Anna Jones Hi Alina FH. I've been writing in my journal about my very unhappy experience at cardiac rehab too! ... Read more
Anna Jones Hi Alina FH. I've been writing in my journal about my very unhappy experience at cardiac rehab too! Mine is also pretty much a do-it-yourself gym type of place. They give me a paper with instructions and that is as much as they do. I don't follow the instructions. I only exercise as hard as I want to. They give me "prune faces" I look innocently back at them. Such is life.
I'm sorry you aren't getting what you need or what your doctor needs. Maybe you can have a talk with your doctor's nurse to see if she can intervene on your behalf? Is there another cardiac rehab that you can go to?
It seems like when one thing goes wrong in our body it just throws a number of other things off. It is such a delicate balance to be healthy.
Sending prayers for you.
Catie B Alina, I hate that you are going through all of this and that the folks at this cardiac rehab seem so ... Read more
Catie B Alina, I hate that you are going through all of this and that the folks at this cardiac rehab seem so disconnected, aloof and unprofessional. Where I attended, the staff were constantly engaged, warm, friendly and very conservative, NEVER allowing anyone to overdo and if anything, erring on the side of caution. Their approach blows my mind. I am soooo glad you are advocating for yourself. Keep taking good care of you and I dearly hope things get better.
Shannon Gray I continue to stand in admiration of you, Alina. Kudos to you for knowing your body, your health, and ... Read more
Shannon Gray I continue to stand in admiration of you, Alina. Kudos to you for knowing your body, your health, and steps that need to be taken to protect that. We have to be our own advocates, and you’ve taught me in so many ways how to go about that with grace, respect, and strength. I pray things will get better! Much love and peace!
Rita Savelis Dear Alina, This sounds rough and certainly not right. But reading it I am overwhelmed as always by y ... Read more
Rita Savelis Dear Alina, This sounds rough and certainly not right. But reading it I am overwhelmed as always by your ability to advocate for yourself, ask questions, and have so much knowledge about your heart and your body. I'm not sure every doctor nor cardiac rehab technician is ready for a patient as intelligent and aware as you. They should be, but they are probably not. I also still get shortness of breath (3 yrs, 4 months later) and don't get the answers I need/want when I ask them. You keep moving forward, looking for those answers and advocating for yourself. Take care. Always rooting for you. xoxo
Alina FH Thank you, ladies. You’re all so kind. Much health to you all. Keep pushing forward! 💕💜💕
Jennifer John Hmm. Your rehab experience sounds unusual at best. Check out my journal pieces on rehab. Might help y ... Read more
Jennifer John Hmm. Your rehab experience sounds unusual at best. Check out my journal pieces on rehab. Might help you find another facility.
Barbara Laurie Hi Alina💕 I have had similar experiences with Rehabs. My first on in CT yeeeaars ago was so fun, i ... Read more
Barbara Laurie Hi Alina💕 I have had similar experiences with Rehabs. My first on in CT yeeeaars ago was so fun, interactive and interesting. My current place in CA is similar to your current experience, except the nurse and physiologist knows that medicine and condition matter! I’m a bit appalled at the treatment you’re getting. My HR never goes over 90! 😄 that’s what the drugs are for! My doctor wanted to decrease my Metoprolol, I said no, I like to have a heart that’s pacing nicely thank you! I’m headed back to CR next month. I will keep all your experiences in mind so I can continue to get better. Well, how about, stronger? I pray you can go in and work out the issues so you can feel better. Maybe that’s all you’ve wanted anyway, just to feel a bit better.. their “goals “ can’t be your goals, because they don’t even know you! When I say “no”, well, what? They gonna fire me from CR? 🤣 Love ya friend, thanks for the update, and Alina? Don’t let them get you down, use it for what you can get out of it for your health. Xoxoxoxo💕❤️💕
Ruth Coleman I quit cardiac rehab after about 3 weeks. The Fitness Center/Gym I had been using was FAR better equ ... Read more
Ruth Coleman I quit cardiac rehab after about 3 weeks. The Fitness Center/Gym I had been using was FAR better equipped. I could track my heart rate on most machines and carried a portable BP machine to check my BP after exercise. My usual crew of friends (gym rats) were very supportive and a trainer was always around. I combine an aerobic session with weight lifting or bands and some calisthenics and stretches. I am very pleased with my progress and am mostly back to before surgery strength and stamina. My surgery was on 2/15/18 - Dbl bypass and aortic valve. I like to exercise and have done so for at least 40 years (I am now 80).
Alina FH Jennifer, it is hard to find another facility because of where I live ... But the facility I used in ... Read more
Alina FH Jennifer, it is hard to find another facility because of where I live ... But the facility I used in UT was amazing. loved the experience there and I did get better (quadruple bypass, aortic valve and aorta replacement).
Barb!!, SOO good to see your words! Yes, ma'am, I wanted to get a little bit better and see if I can "fix" my shallow breath and my pain when I exercise even a little bit. I LOVE how you said they can't fire me. Rather, me-them, right?! Just kidding. Hopefully we'll find a common ground. Please be well and be strong. Love you, always!
Ruth, you are an inspiration. I agree with you - I thought the same thing: I can measure my pulse on my watch walking on my street and then come in and take my BP. I don't even need a gym (although I have access to one at home, too).
Keep improving, everyone! Thank you for your thoughtful words.
Kirk Bepler OMG.. That is the same experience I have with Cardo Rehab, you take your own clip board and weigh the ... Read more
Kirk Bepler OMG.. That is the same experience I have with Cardo Rehab, you take your own clip board and weigh then they take you blood pressure and you put on the connections so they can monitor you.. After that your on your own, I had friends husband that was in Cardo Rehab what he was explaining was a whole different experience for him it was like having a trainer. I could pretty much the same thing at a gym, but it's not going to cost $300 for each time I when to a gym... Thank you for posting this!
Alina FH Thank you, Kirk, for reading! The best of luck and much health to you!
I have been pondering upon life and the resilience we have, the stubbornness we have come equipped with from birth to embrace it. To fight on. To stay on the ...Read more
I have been pondering upon life and the resilience we have, the stubbornness we have come equipped with from birth to embrace it. To fight on. To stay on the path of making ourselves stronger and to live.
This piece is for all the people out there who are just now finding out they have to have surgery, or for those who are about to walk into the pre-op appointment tomorrow and are wondering how will they ever come out of this daunting experience. And also for those who have put the surgery behind them but are now going through the hard first days and weeks of finding their new normal. This is also for everyone who, I know, can relate. This is for you all.
I was thinking recently about what all happened to me in early 2016 when I had my surgery. I walked into that hospital in Utah on my own two legs. I was rolled into the anesthesia room at around 7 AM with a smile on my face. They gave me that first (I think) IV shot of whatever … and I slipped away into the big slumber (I think, as I cannot remember anything till the next day around 2 AM when I woke up in the ICU with what seemed like a whole army of nurses around me).
I was thinking the other day about what all happened to my body in those hours, and it made me stop in my tracks. This really did happen. They took me to the OR and they stopped my heart. They cut my chest open, then my heart open (I think). They sunk me in buckets and buckets of ice to “freeze” me during the circulatory arrest procedure they had to do to trick my brain that it did not need that much oxygen to survive. They put me on this machine that pumped the blood and breathed for me for many hours. They removed my aortic valve, and then they removed my ascending aorta. At this point, there was no life-giving blood flowing through my arteries. Only some flowing through my veins, tricking my brain that it was OK not to breathe.
They replaced my aorta with a man-made graft and did the same for my aortic valve and root. They “cleaned out” (cut into the walls and removed the bad tissue of) my aortic arch which was thick with plaque. They “un-froze” me next and then started working on my by-passes. They removed veins from my left leg and sewed them onto my heart and did the same thing with the arteries from my chest – to bypass sick arteries. Somehow, through another big miracle, after they stopped the heart and lung machine my heart jolted itself on its own back into beating and making me a whole person again. Later on, my lungs started breathing on their own.
In essence, I was dead, really, if that machine would have stopped and the three surgeons, one anesthesiologist, one “heart-and-lung machine guy” (as my surgeon called him), three PAs and the army of nurses and other staff would have walked away on me. But they didn't. And I was breathing on my own by the time my husband saw me, in the middle of the night, and then when he left to go home.
When I got home from the hospital, after having a heart attack while in the hospital, 8 days after the surgery, I could not do a lot of things that are routine for any normally functioning human being. I could not open doors that were too heavy, including my refrigerator door. I could not tie my own shoes – I could not bend over at all. I could not clip my nails, because of the neuropathy in my fingers. I could not put on my socks. I took them off with my other foot. I could not wear a seat belt nor carry my purse on my shoulder or on my back. I could not wear a bra. I did not sleep on my back or my side; I slept sitting up for six months. After three months of medical leave, I went to work pulling a dolly that carried my purse and my lunch bag. I snuck into the building and in offices behind someone that would open the large, very heavy doors for me. I learned pretty fast where all the doors that let you push them open, rather than pull are, because I was afraid my chest would pop open if I struggled to open them myself.
Most of all. I was tired a lot. I was tired even after not doing anything at all. I was drained. I did not sleep well, but I watched a lot of TV, spent a lot of time on social media, and read a lot. I was not able to even cook, as a pot of water was too heavy to carry. I just rested. A lot. Well, I laid there – it did not feel very restful at all.
I remember writing during those early days of recovery that I cannot imagine being normal again, traveling, going about my normal life. And someone, a kind soul, told me that then I was praying for “good hours, but in time they will become good days and later good weeks.” I was dubious. But those words turned out to be true.
In the past two years and almost 5 months, I slowly grew stronger, just like that kind person predicted for me (or rather shared from experience). I started taking trips by plane again after a year. I visited three countries and went on a cruise a year after the surgery. This year, I flew across the ocean and visited my family in Europe. I carried my carry-on and my heavy backpack during security check-ins and switching gates in several airports. I drove across the USA last year, all by myself, when we moved from Utah to North Carolina. I did wear a seat belt with no trouble then.
I just took my first trip alone for a week, for work. I packed my carry-on with clothes, shoes, toiletries and gifts for a week, and had again a very heavy backpack with my purse and computer in it. Carried them all on my body, and lifted the heavy carry-on above my head and put it in the overhead bin with no problem, not even a sweat. My husband and I just finished staining our screened-in patio a couple of weeks ago on a Saturday. We worked together, side by side. We did about the same amount of work, although he did most of the “up high” areas, and I did the floor and the lower areas. It was 95F and about 70% humidity that day, and about half of that day we were in direct sunlight. I did fine.
I remember I did not plant a garden the year of my surgery because I could not sit or bent over in the sun at that time. Sunny days (even with no humidity) tired me so easily. While staining my deck I was in awe at how much different, stronger, my body has become in just two years and a little bit … I never hoped I could come this far. And I am not perfect, and there are still things I am working on two years and five months later, but I know one day I will reach most of them, just like I did all these other milestones …
If I have learned anything from this experience is that we are strong. We are built to fight, and we should give ourselves and our bodies more credit than we are inclined to to begin with. Thinking back at all these things that happened to my body and knowing how I feel today fills me with humility and gratitude!
I wish everyone happy summers, strong recoveries (they can be only as fast as you are comfortable with), and the faith that one day you will be whole again. I am just one living example that that is possible …
Much health and … keep on ticking!
Anna Jones Alina FH, between all you have been through and your attitude, you are amazing. Thank you for your g ... Read more
Anna Jones Alina FH, between all you have been through and your attitude, you are amazing. Thank you for your generosity in sharing your story, and your determination.
Susan Lynn Wow! What an incredible story. Glad you have had a full recovery and are enjoying an active life. ... Read more
Susan Lynn Wow! What an incredible story. Glad you have had a full recovery and are enjoying an active life. I recently allowed myself to think about what happened while I slept. I wish I asked my surgeon for more details. I didn't think they cooled body temperatures with ice any longer. I believe my blood was cooled through circulation via the heart lung machine with an injection to speed up the process. I also believe a defibrillator was required to get it going again.
It truly is amazing what modern medicine is able to achieve. Thank heaven for talented cardiac surgeons and especially for the anesthesiologists that allow us to take a great nap while it's all happening! 😴💔 to 💖
Debbie Chatzky Your words are beautiful! Continued health!
Peggy Whitecotton Alina, I can relate to everything you posted, thank you. It will be 3 years next month for me. When I ... Read more
Peggy Whitecotton Alina, I can relate to everything you posted, thank you. It will be 3 years next month for me. When I think back to that time It totally amazes me that I survived at all or any of us for that matter. To have your chest sewed open, your heart stopped and restarted, the whole idea still blows my mind. My grandmother died at 55 and her mother in her 40's, both of heart valve diseased. They died of heart failure because there was no surgery in those days. My mother had heart surgery in 1962 to close a hole in her heart. At that time there were only 2 surgeons in the state of California (where she lived) that was able to do the surgery using a heart/lung machine. She was given a 50/50 chance to survive the surgery (that was average back then) but without it only 6 months to a year to live, I was given a 2 to 4% survival rate. My mother had her surgery at 48 years old and lived to be 84. She did not die of heart problems. Knowing my family history helped me to face my own heart surgery. Can you imagine no hope at all to survive your heart valve disease? As my surgeon said it is a death sentence without the surgery..... Best regards to all who have had OHS and to all facing it in the future.... Keep on ticking!
Rita Savelis Dear lovely Alina, What a gift this morning to read your words, which always speak to me. Thank you f ... Read more
Rita Savelis Dear lovely Alina, What a gift this morning to read your words, which always speak to me. Thank you for continuing to write, for being there.
Keep planting gardens and taking trips. Much love to you.
(P.S. Three of my favorite sentences: "I just rested. A lot. Well, I laid there – it did not feel very restful at all. ")
Kelly Stoll Thanks for sharing and for the inspiration.
Alina FH Everyone, thank YOU for sharing YOUR stories, as well, with all of us. We all have learned so much fr ... Read more
Alina FH Everyone, thank YOU for sharing YOUR stories, as well, with all of us. We all have learned so much from each other!
Anna, I hope that your recovery is going well.
Susan, they did have to cool my whole body with ice, because they replaced my aorta and worked on the aortic arch. When they pull that out, there is no oxygen blood going through your system because your aorta is severed - so they need to trick the body into preservation mode, and they have to cool the whole body way down (your normal body temperature is 98F, mine was 60F when they did this), not just the blood going through the machine. At least, that was the explanation I got.
Peggy, I am SO sorry about your great-grandmother and grandmother! Those were very young ages! I am glad your mom could take advantage of the improvements in medicine and she had a better, or at least lengthier life. Much continued health to you.
Rita, so good to hear from you, always! Your favorite sentences cracked me up! :-)
Much, much health to all of you, and again: thank YOU!
Susan Lynn Alina - thank you for explaining. I learn something new on this site every day. You are resilience ... Read more
Susan Lynn Alina - thank you for explaining. I learn something new on this site every day. You are resilience personified! Thanks for your inspirational story! All the best!
Shannon Gray Beautiful! You know how I love to read your writing! Sending love to you!
Barbara Laurie Alina, I was just reading a note you sent to me today and I asked to the Lord for your health, then, ... Read more
Barbara Laurie Alina, I was just reading a note you sent to me today and I asked to the Lord for your health, then, violá, you post! I finally read your last blogpost and have a better understanding of what’s up, but to read of your optimism and happy strength you possess is so wonderful! 🌿💕 I really do remember your days, from surgery to recovery. How you did it all amazes me. I’m sorry I kinda laughed when you had to run, spraying disinfectant around your Mom who came to help, but got sick herself!! But, you went home with a chest tube IN! And even went to Cardiac Rehab when Most of us were still too weak to move at all! You’re a strong lady with a lot of 💕 heart. God Bless you. Thanks for sharing this with us🍃🌸🌱
Alina FH Thank you, sweet Barb! YOU are MY rock, for sure. Your faith and strength put me to shame. I remember ... Read more
Alina FH Thank you, sweet Barb! YOU are MY rock, for sure. Your faith and strength put me to shame. I remember when mom got sick. I didn’t know it then but what she had was not catchy, but much worse (COPD, and later lung cancer). I still chuckle about it myself. How paranoid I was AND self absorbed. Being scared is part of the bill on this journey, I am afraid. Much health to you. Love, always. 💜💕💜
Hello, everyone,
I survived the most recent cath yesterday, and most importantly, five full days without Warfarin! No symptoms from this at all, other than ...Read more
Hello, everyone,
I survived the most recent cath yesterday, and most importantly, five full days without Warfarin! No symptoms from this at all, other than sheer joy of eating all the greens I wanted without counting my portions. :-)
The cath itself was not bad at all - this was my third catheterization in 13 years now. I have done three in three different hospitals and they are all a little bit different, but for the most part the same. I never accept the drugs they give you (for "relaxing" or for pain), and I think I am better off without them, as the recovery period is much shorter, and I am aware of everything that is going on in the cath lab as it happens. The only drugs they gave me were the Lidocaine for the local anesthesia for the groin where the catheter was inserted. I was able to talk to the cath cardiologist and with my regular cardiologist during the procedure and to understand the findings as they learned them themselves.
Everything went well, and I talk more about the findings of the cath in my blog - so feel free to browse: http://livingwithfh.blogspot.com/2018/05/another-cath-some-more-answers-and.html
I think the next step is another office visit with my regular cardiologist and very likely more cardiac rehab.
Thank you to all of you who thought about me during the past few weeks, and have wished me well. Same wishes and prayers right back at you ten-fold!
I pray for everyone who is facing heart surgery and heart procedures coming up. I wish you all the best.
If you might remember and follow this saga, my new cardiologist suggested that I needed to have a heart catheterization, to find out more ...
Anna Jones I read your blog and am very glad that the Praluent (or whatever) is working so well for you, and hop ... Read more
Anna Jones I read your blog and am very glad that the Praluent (or whatever) is working so well for you, and hope that you get further encouraging news at cardiac rehab.
Just as a little aside, my husband and I both have had separate cardiac interventionists as well as interventionists who were also our cardiologists. I found that I got better care when the two were separate doctors... but that is just me.
Sending best wishes.
Alina FH Hi, Anna - That is great to hear, about the two sets of cardiologists. This was total news to me, aft ... Read more
Alina FH Hi, Anna - That is great to hear, about the two sets of cardiologists. This was total news to me, after having worked with cardiology for the past 20 years of my life in The States, and even longer in Europe. It felt very strange and disconnected, but it ended up being OK. Thanks for the note. THE best of luck for your upcoming surgery. Praying that it will all be well. Hugs.
John Xu Congratulations on the clean up of your native arteries! Amazing! You may want to contact Regeneron, ... Read more
John Xu Congratulations on the clean up of your native arteries! Amazing! You may want to contact Regeneron, the manufacturer of Praluent, who should be interested to hear your story. If your LAD is blocked but your heart still gets sufficient blood supply, then it must be the collateral circulation that bring blood from other branches to the area covered by LAD. Another naturally grown wonder.
Kate Watson Hey Alina, just read your blog post too. So glad to hear about your good news! I would be totally f ... Read more
Kate Watson Hey Alina, just read your blog post too. So glad to hear about your good news! I would be totally freaked out if they told me to stop the warfarin. I'm surprised no "bridge" was necessary because I thought it always was! Hope you enjoy your summer and can worry less now :)
Phyllis Petersen I'm glad you've finally gotten some good news. Hopefully, you can continue to improve. Cardiac rehab ... Read more
Phyllis Petersen I'm glad you've finally gotten some good news. Hopefully, you can continue to improve. Cardiac rehab definitely takes some of the "how far should I push myself" stress out of the equation. The reduction in blockage is fantastic! All the best Alina!
Wanda Mroz Alina I just read your blog and I’m very happy to hear you get some positive news! Having a cath w ... Read more
Wanda Mroz Alina I just read your blog and I’m very happy to hear you get some positive news! Having a cath with no relaxing drugs is quite brave... I was terrified for my one cath before surgery, but for my ablation, I was completely under thank goodness. You truly are a walking miracle. Hugs 🤗 ♥️🙏🏻
Hi, everyone,
I just wanted to mention that I am scheduled to have another cath procedure later this week. This is not really related to my On-X aortic ...Read more
Hi, everyone,
I just wanted to mention that I am scheduled to have another cath procedure later this week. This is not really related to my On-X aortic valve which looks OK (although it does leak around the edges), but it has to do with improper irrigation of the bottom of my heart. They need to understand why this improper irrigation happens and whether they can treat it surgically (with a stent or by-pass) or medically (with drugs).
They told me to stop taking Warfarin 5 days before the procedure, which I am doing and of which I am scared, as you can imagine.
The cardiologist said he spoke with heart surgeons and they said given that I have an On-X valve, there should be no need for "bridging" the blood thinners for these 5 days before the procedure and that I should be OK to be off if it completely. I am still taking the aspirin and all the other drugs. Warfarin is the only thing they're stopping. I will go back on Warfarin the day the procedure ends. Depending on what they are doing, they might add other thinners, too, but that is to be determined.
Just wanted to share, because I know some of you might consider procedures, and are wondering whether you have to stop Warfarin and for how long.
Hope this is helpful.
Much health, strength, and amazing teams, I wish to all of you!
Anna Jones Sending prayers that you will get answers finally.
Mark Wilbur Prayers from us, too, Alina. Hope they have good answers for you.
Wanda Mroz Prayers Alina... and hugs that all goes well. Be strong. 🙏🏻💞
Rita Savelis Hi Alina. Great that you don't need a "bridge" (what a pain that can be)! Try not to worry...as if t ... Read more
Rita Savelis Hi Alina. Great that you don't need a "bridge" (what a pain that can be)! Try not to worry...as if that's possible....and have a smooth cath procedure.
Barbara Laurie Hi Alina! Sorry you have to go through this Catheter, I sure hope they find an answer for you! I too ... Read more
Barbara Laurie Hi Alina! Sorry you have to go through this Catheter, I sure hope they find an answer for you! I too am having a Catheter on June 1st, and I have to start bridging 5 days ahead, going to get a hands on lesson tomorrow, since I was stabbed in my belly, twice a day for 11 weeks, 10 of them with heparin, then Lovenox, finally started Warfarin. I am hopeful, of they close the hole in my heart I’ll be stopping the Warfarin. So they said, but I’ve learned not to trust what they say when it comes to Warfarin ‼️❤️😄
Well, between your Cath, mine and Nicola’s surgery I’m hoping this will be a banner month of good outcomes❤️😄❤️ Thinking of you.. good health!
Sometimes I wonder: “What is purpose of seeking to feel better? Have I not learned that I will never ever feel like I am running on 100% capacity, firing ...Read more
Sometimes I wonder: “What is purpose of seeking to feel better? Have I not learned that I will never ever feel like I am running on 100% capacity, firing on all cylinders?! My HoFH will continue to do damage, my heart has had a major overhaul AND a heart attack. There is never hope for really feeling truly healthy and truly at full potential, as if I were a healthy person. So what is the point of all the tests and all the interventions that doctors still want to pursue?!”
And then there is this other little voice inside my head that says “Why not?! Medicine is so much more advanced than even 10 years ago. If there are ways, and procedures, and meds, why not seek the best life possible? Why not trust a doctor or two that do believe in the silver lining?!” The trouble with that is all the risks involved, and all the doubt, that despite all the advancement, I still have an unbelievably broken body, which is irremediably damaged for good, and forever, which will never ever run at 100% capacity, even with the best care.
Let me bring this in focus: I met with the second cardiologist since I moved to NC. He struck me as somewhat of a bully, a rushed maniac with a weird passion for treating hearts and somewhat of a bull in the China shop. Definitely not a boring guy! He initially was “guessing” based on what he has heard about my history (mostly from my previous cardiologist's notes) that the biggest problem with my heart is my AI (aortic insufficiency), caused by my (still) leaking aortic valve. Although, just like my previous cardiologist, he could not hear my AI (the leaking), he said the reason my blood pressure sometimes has “no bottom” (or a very low one) is because of the AI. He also guessed that my heart probably has fluid in it because of this and this is why my legs swell up sometimes. He also chalked the shortness of breath, the dizziness and other symptoms of fatigue and slowness to the AI as well.
He recommended a heart echo and then a nuclear stress test. After both were done, he called me and the conversation went into a completely different direction that before. He said “according to your echo, your heart is good.” That's it! He didn't say why, and he did not mention one word about my AI (which he believed to be severe before the echo, just based on the notes he read and on my symptoms). He said nothing about how badly my valve might be leaking, if at all, and whether there is a concern even about the leakage at all.
He, however, spoke a lot about the results of my nuclear stress test: he said when at rest, my heart gets an adequate amount of blood (and oxygen), and the vascularization is appropriate in my entire heart muscle. However, when my pulse raises to even as little as 120 (my goal was to hit 150 beats per minute, but I started getting short of breath and dizzy around 120, so they stopped the test), there is a corner in my heart (lower left ventricle to be exact) that does not receive blood at all. He said it's either a scar from an old heart attack (my MI was localized in the same area he saw on the test), or there is a blockage there that needs to be opened up.
So, his number one concern now is to get to the bottom of this mystery: he now believes that my shortness of breath, my dizziness, and all my other symptoms of fatigue come because of this area of my heart is struggling to work without proper oxygen.
He wants to do a cath next to understand which is the cause: if the cause of the lack of blood in that area of my heart is an old scar from the MI, I am not sure what he can do for that, really. But if the cause if a blockage, he wants to put a stent in to open it up. After which, he wants me (like he said the first time he saw me) “back in rehab”, because the heart has to start working better after the blood flow is opened up. The first time he mentioned rehab to me it sounded bogus, but this makes sense. Not sure what the course of action will be if we're not talking about stenosis but rather some other traumatic damage from my heart attack. He seems to be pretty certain that it's a stenotic spot where maybe a bypass was not done before, or where it was done and it didn't take. (have I mentioned that this doctor guesses a lot?! He does.)
I am, of course, not crazy about a stent, because that can also be a liability (stents can clog, too, with scar tissue). A little voice inside tells me also: “what is the point of all this? Can a stent really make you feel like a normal person? Can any procedure ever make you feel like a normal person? Of course not! So why add more side effects and worries, when you can just cope, like you have done for two years now, since surgery, and for 20+ years now since the first sign of cardiac problems?!” But not doing anything to help beaten heart (no pun intended) sounds just as crazy.
The doctor wants me to come up to the 150 bpm pulse and keep going with no symptoms for at least 15 minutes. But I have had angina before my surgery for years. Now, I have had early fatigue and shortness of breath after just a little bit of walking. Is the goal (for my age and weight, height, etc) of 150 bmp really realistic?! With everything that went on in my heart and with the constant abuse of high cholesterol (which will continue), is it really possible to hit the targets of a normal person?!
The one thing that motivates me to really look for answers and for a possible solution for getting my whole heart irrigated properly is that my symptoms kick in even without extensive exercise. They kick in after speaking for a longer period of time, or when I am nervous about a seminar I am presenting, or speaking in front of a crowd. So, simple things like these make me symptomatic. And to me symptoms means more damage to the heart, inherently. The heart cannot be healthy when it's struggling for air like this, when I do the simplest things. And I don't want it to quit on me when, say, I need to run across an airport dragging luggage during a short layover.
He wanted to do the cath within a week from my test (it's passed already), but personal conflicts for both me and the doctor have postponed this till a month from now. He wants me to increase my Atenolol to ensure my pulse rate stays low. In the meantime, he told me “not to go crazy: no jogging, no hiking steep hills, no pushing heavy carts. Just keep the pulse under 100, he said, or lower, as low as I can.
I am planning to have at least one more office visit with the doc before I go in for the cath, just to ask him all the questions I still have about all the tests he has done and about his overall opinion about my heart: some things that I knew I had from before (like the AI) – how severe are they? Should we worry about them? And also: is my heart ready for a stent?! What is the maintenance we need to consider when that will be implanted? What are the steps to take if I don't need a stent? If my heart is damaged otherwise from the MI, is there any remedy for that? If yes, what is it?! Lots of questions, still, as you can see …
I feel sometimes like trying to see this doctor is worse than trying to get approval for Praluent. You cannot get an appointment sooner than 6 months ahead. Now, because I am somewhat of an acute patient, I had to beg his office assistant (his nurse told me she cannot schedule anyone sooner than what the public calendar shows, and I have to work with his personal assistant) to schedule the appointment at least 2 months after my previous one. When we do meet, he is incredibly rushed and off to the next patient, so I have to really come prepared every time, with written questions to ensure I don't miss anything from what I want to know.
But we do what we have to do to get our answers, don't we?! A busy schedule, a rushed physician, or an inflexible insurance company should not stop us. Here's to resilience!
I am very worried about what's in my heart, and I am doubly worried that he has little time to really know what's going on. Maybe he's used to this rushed schedule and to him is second nature to run off from one acute case to another … We can only hope …
I wish everyone smooth rides and easy questions. Much health and a beautiful spring, everyone!
Anna Jones Alina, I hear you. I have never understood the purpose of life. It is an obligation forced upon us ... Read more
Anna Jones Alina, I hear you. I have never understood the purpose of life. It is an obligation forced upon us by birth. Hence, we do what we must to survive. And we try to live as long as we can. As with all effort, we try to make the result a good one.
Ask your questions of the doctor. Sit in front of the examining room door to keep him in place until you are through with him. This is the American way of medicine these days. I long for the doctors of long ago, who knew their patients and who cared.
As an aside, I met with my surgeon, who in the middle of my questions said: "I have another surgery to do soon. Is that all your questions?" I had driven 3 hours to see him. I would have to drive 5 hours in traffic to make it home. And he let me have 10 minutes of his time.
I was talking with a friend. We were saying that there are certain professions where the people become obnoxious. As a patient, we want the confidence, so we are willing to put up with them being obnoxious.
Sending best wishes.
Barbara Laurie Hey Alina, since you know I’m in a similar boat I just wanted to ask you, can you talk with your su ... Read more
Barbara Laurie Hey Alina, since you know I’m in a similar boat I just wanted to ask you, can you talk with your surgeon from 2016? I thought you two got along well. Dave is going to touch base with Dr. Cambronero, my #2 surgeon on my case the the Dr that pushed his schedule around just to be with me for 42 days, being there for each weird procedure I ended up needing as well. There are better doctors out there, and if you think there is no way of relating to this doctor is it really healthy for you to not get some answers?
I’ve learned that even having the answers doesn’t always equal a lovely outcome. Now I’m facing a Cath and procedure where everyone is in disagreement! My local cardiologist really is hesitant. He’s a cautious person. I am in the middle, torn about wanting more of my health back and risking what I’ve been given. I just wanted to say I understand. Personal fortitude to forge ahead where others would retreat is a bravery that, I believe, comes from God. But, even so, no matter the source, only you can decide, trust what you know. And seriously, if you have to postpone and say no, you can. We love you, Dave sends his best. Thank you for the update! Glad you are still working towards some solutions, praying you will see the way through. 💕🌻💕God Bless.
Gina Fiorentino Dear Alina, I concur with Anna. Sending you love today... and praying that you will find answers.
Alina FH Ladies, thank you so much for the kind words.
Anna, I can see how medical care definitely is more ju ... Read more
Alina FH Ladies, thank you so much for the kind words.
Anna, I can see how medical care definitely is more just a business and less true "care." The "care" concept sort of gets lost, at best in the concept of "research" and most times in the concept of "business". Unfortunate for us as patients. I am personally more happy with doctors who disclose up front that they cannot see new patients, rather than overbook themselves to the point of compromising anyone's outcome ...
BARB, thank you SO MUCH for being there for me, my friend! Happy belated birthday, also! I hope you have many, many years of health ahead!
I do know you understand many facets of this journey, better probably than all of us.
There are lots of reasons why I am not reaching out to my surgeon and former cardiologist: will they even care to respond since I don't live there anymore? Even if I send them the transcripts of the tests, they will probably want to see the actual pictures. How hard and what a hassle is that to obtain? (and we all know my current doctor hates that I get second opinions from others - will he even release the documents?!) The most important question to me: what is the purpose of all this? I want to have a support system here, where I live now, so that if something bigger should happen these people, around me, would know what to do with me. So, I see this as a waste of time (mine and theirs). Even if they do have a different opinion, then what do I do? Find someone else close to agree with them to know what to do next? I think I will try for now to stick with this guy. He does have good points, although he is very scattered, and if I don't hear what I want at that pre-cath office appointment I will probably go elsewhere, but still in this area, so I can have a team I can rely on here. I do miss my old guys, though.
Thank you all for the nice words, and MUCH, MUCH, MUCH health to you all!
Rose Madura Hi Alina, I've learned through my surgery and the complications how very busy the surgeons and cardio ... Read more
Rose Madura Hi Alina, I've learned through my surgery and the complications how very busy the surgeons and cardiologists really are. The have hundreds if not thousands of patients. I understand why you want to spend time with them. But I guess I'll venture to say that the very busy doctors are probably also the best ones. Once I had an appointment with my surgeon and had to meet instead with his PA because he got called into surgery. And we worked out a system with my cardiologist. He'd say everything he needed to say, then I would ask the questions I had written down. This way, he would not forget to explain everything to me (which may have happened if I interrupted him with a question). This worked out well. I know it is frustrating for you but hang in there. It will get better. The point of it all is it's your life and it should be the best quality possible. Prayers coming your way for peace.
Kate Watson Ah Alina, this is really tough. Having been to 5 million doctors in my life, I know that there are m ... Read more
Kate Watson Ah Alina, this is really tough. Having been to 5 million doctors in my life, I know that there are many crappy ones, but there are good ones too. In many cases I don't think it's their fault that they are over booked, as many work for huge medical systems who force so many patients upon them. So it is a predicament. However, this is your heart and you do need to have a cardiologist who you feel comfortable with and not feel like you are putting him out if you ask him questions or not worrying about crushing his ego if you want to seek another opinion. My newer cardiologist is super busy and it takes a long time to get into him, however, he always answers every one of my questions and never rushes me. He is empathetic and caring. When I have had non urgent questions in between visits that I email him, it may take a few days for his nurses to check with him and respond, but they always get back to me. I know it's exhausting looking for a new team of healthcare providers, I do get it. But I wouldn't give up looking. A cardiac cath isn't without risk, so please just make sure you feel he is competent and that you are in good hands before you do that procedure. I know you will, but I worry about you in this situation. Have you found any reviews on this doctor online? Sometimes they can be insightful. Legally he has to release those records if you sign a consent so I wouldn't worry about that aspect. I'm always wishing you the best and sending you strength and good vibes to get through all of this.
Shannon Gray Oh Alina, I continue to think of you. This journey doesn't seem to have a finale, does it? I do belie ... Read more
Shannon Gray Oh Alina, I continue to think of you. This journey doesn't seem to have a finale, does it? I do believe in you...your wisdom, your knowledge, your self awareness. I pray you be led to do and find the healthcare for you. I so wish there was something I could say or do to help you through this. Just know prayers for peace and continued healing are headed your way.
John Xu Alina, I am not a doctor so feel free to ignore my comments. But I have just gone through MI, angiopl ... Read more
John Xu Alina, I am not a doctor so feel free to ignore my comments. But I have just gone through MI, angioplasty and things, I hope I could chip in a bit. I have a total blockage in my LAD. Multiple MI. My cardiologist totally ignored my CAD for 3 years. My interventionist opened my blockage and put in a stent. Blood flow improved a lot. My walking speed improved from 2.6mph to 3.8mph (without short of breath). However I still easily feel fatigued. For example, three hours after getting up, i feel like I need a nap. I do not know what caused it but I tend to think it's caused by the MI. I did a MRI on my heart and my LV is 21% scared. I suggest you do a MRI to access the damage to your heart if any (I do not believe it's severe from reading your journals).
John Xu If you think you are prone to occlusion, stent is not a good idea. My doctor told me 10% people get o ... Read more
John Xu If you think you are prone to occlusion, stent is not a good idea. My doctor told me 10% people get occluded again within one year.
Alina FH Hi, John - thanks so much for the comments. I really appreciate it. I need to talk with my doc to see ... Read more
Alina FH Hi, John - thanks so much for the comments. I really appreciate it. I need to talk with my doc to see about what my risk is for occlusion and given that I am on Coumadin, maybe my risk is low?! But I need to understand it. Maybe Coumadin works for the valve, but not for the stent clogging? I have no idea, but it'll be one of the questions. I had a 99% stenosis in my LAD as well but that got bypassed. I do hope that you're in a better place than before. This fatigue is something else, isn't it?! Stay well, and, again, thank you!
John Xu Hi Alina, Thanks. I do not know whether blood thinner would prevent occlusion or not. I tend to think ... Read more
John Xu Hi Alina, Thanks. I do not know whether blood thinner would prevent occlusion or not. I tend to think clogs are formed mostly from calcium and cholesterol. You were lucky that your doctors found your your blockage before it could do severe damage to your heart. Even 1% (which is an estimated number) meant your artery was open and there was still blood flow through your LAD. 100% blocked on the other hand is very different situation. In a comment to your previous post, I suggested you do a Lp(a) test if you have not done so yet. High level Lp(a) increases your risk for atherosclerosis. Mine is normal. This small blood test increased my confidence in the angioplasty procedure.
Alina FH Hi, John - Thank YOU for the note. I will discuss this with my cardiologist. They did do this a while ... Read more
Alina FH Hi, John - Thank YOU for the note. I will discuss this with my cardiologist. They did do this a while back (maybe 2007-2008 or so) and mine was normal at that time. They just did a lipoprotein (b) and that is slightly elevated. Thanks for the note.
The road has been a little bumpy lately, especially since I moved back to NC. It's been hard to find proper care here, even when I started with what is rumored ...Read more
The road has been a little bumpy lately, especially since I moved back to NC. It's been hard to find proper care here, even when I started with what is rumored to be the best in the area. In my opinion, what people consider the best is at best mediocre. At least that is my opinion so far, after four months and a half of seeing different doctors.
I saw a new cardiologist this week and I will not complain here about his questionable bedside manner or overall bully-ing attitude. But his assessment of what is going on left me part sad, part concerned, and part disappointed. All, not good things.
Since my surgery, I have had the same symptoms: I still tire easily, I get dizzy sometimes (like right now, this minute, as I am sitting on the couch typing this), I am short of breath when I climb an incline or stairs, my breath is shallow and I am often left with a lack of air, and most of all, my blood pressure is very odd, with a large gap between the numbers. My previous cardiologist and surgeon agreed that the odd blood pressure and the dizziness could be from my AI (aortic insufficiency), because my new valve is still leaking. But they said there is not much anyone can do about that. The leaking is not concerning, they said, as it is “mild”. They explained my shortness of breath due to a raised diaphragm that was damaged during the surgery, and they said they do not believe that had a connection with my heart.
Well, now, I have done two lung tests and they both proved that my body does not get enough oxygen when I exercise – something I could tell you, too, because I crave air when I exercise, and my legs cramp up.
So the new cardiologist (the second I am seeing after my move) wants to figure out how much my valve is truly leaking for himself, so he ordered an echo, and he wants to figure out how well my heart muscle is being irrigated, so he ordered a nuclear test. He also said he “wants me back in cardiac rehab” and that puzzled me. He explained that he needs to see in a controlled environment what my heart is doing under exercise and if I can condition it to make it work better. He thinks I don't exercise hard enough and this is why my heart is not functioning well, possibly even having some fluid around it, too (this was new to me). He also guesses that I don't exercise enough because something is wrong with my heart but he wants to fix that and then set me free to work my heart to strength. I exercise as much as I can without atrocious discomfort but I am guessing that's not enough for what he wants the heart to do.
At this point I feel lost. Going back to cardiac rehab after 2 years since surgery seems a little bit too little too late. But maybe it's not. Have any of you had this experience where you went back to cardiac rehab to build strength back up just because you could obviously not do it on your own?! Or for any reason? What was the reason and how did it go?!
Not sure if related to all this, but he thinks it is, my blood pressure changed some more in the past few months. Since the surgery, besides my two BP numbers being too far apart, my BP has only spiked occasionally. It was high maybe once a week, or rarely twice. Because of this, it was very hard to medicate it, because when I was on medication for it, most days I was dizzy and lethargic, because my BP was normal and the pills would make it even lower. But lately, every time I go to the doctor it seems it is very high. Yesterday, it was 190 over 60 (the gap is still big, but the first number is huge). Today, I took it myself at home and it was 171 over 55. Again, big. And I was just working from home, under no duress, you could say. He wants that treated, for sure. He explained the big gap between the numbers by the AI, too, just like my previous docs.
Like I said, I am in a very weird spot right now: I don't like the second doctor I am seeing and find trouble trusting him, but I do think that he wants to find out more about why my symptoms are what they are this late into the game. I also feel that my old doctors maybe knew my heart better than anyone and they just knew that there is nothing more that could be done and I should just live with the symptoms I have?! Not sure …
I also, of course, still have HoFH which caused all this – and I wonder if even with the new treatment for my cholesterol that is keeping the numbers at the lowest levels I have ever had (but still not normal!) my HoFH is still doing damage to my arteries which are not allowing the heart to get stronger?!
Sometimes a second opinion helps but what if it throws you into a bunch of unnecessary testing and useless searching?! How would you know?!
I am looking at this as part of the whole journey and maybe having a new opportunity to find even more about my heart. But worry, to some extent sadness, and disappointment have definitely set in …
I wish you all strength, health and hope. And good doctors that just get you!
Steve Farthing Sorry you have to deal with these issues. Thank you for the update.
Anna Jones Hi Alina. Well, a number of things cross my mind. It is very difficult to work with a doctor that yo ... Read more
Anna Jones Hi Alina. Well, a number of things cross my mind. It is very difficult to work with a doctor that you neither like nor trust. I am in the same boat with my current cardiologist and am about to change doctors. So, I get your dilemma.
It does sound like the doctor you don't trust is trying different things to figure out what is going on with you. Going back to rehab to see what your readings are during exercise sounds like a good idea, and no matter what, wouldn't hurt to know. I also like that he is thinking outside of the box trying to determine what to do instead of just shrugging his shoulders and figuring that all other doctors did everything possible and there is nothing more he could add. Believe me, there are millions of doctors who operate that way and I would throw each and every one of them away as useless.
Is it possible for you to have a telephone consultation with one of your prior doctors that you do trust. Tell him what you wrote here and listen to what he has to say. If he thinks it is a waste of time, then you can move on. Maybe instead he will tell you that there are good reasons behind the un-trustable doctor's actions and that will put you more at ease.
I also don't see that it hurts to redo tests and begin the search anew. New eyes see new things. As an analogy, there are plenty of cold criminal cases that are solved by new detectives.
Wishing you faith and peace on this journey.
Kate Watson Hi Alina, I'm really bummed to hear this because I don't wish for there to be anything else wrong wit ... Read more
Kate Watson Hi Alina, I'm really bummed to hear this because I don't wish for there to be anything else wrong with your heart, of course. And I can just imagine the sadness and worry you are experiencing. It is really hard and very frustrating to find the right doctors you can trust, but as Anna said, I do like that this guy is going about some different routes to actually look for a cause instead of to tell you that he doesn't know and that you just have to live with the symptoms. Have you been able to find any reviews on any doctors there? I find that reading reviews, asking other patients and other healthcare providers has been the only way I have found the team of doctors and healthcare providers that I now have. But there's been a lot of tears along the way in the process after dealing with some jerk doctors. So I think it's worth getting these tests and seeing where this guy gets you, but maybe keep searching too for your "soul cardiologist" :) I will keep sending you thoughts for good health, clear answers, and a cardiologist who is a great fit for you. Please keep us posted.
Barbara Laurie Alina! I’m so sorry to hear about all this trouble you’ve been suffering! I did go back to CR thi ... Read more
Barbara Laurie Alina! I’m so sorry to hear about all this trouble you’ve been suffering! I did go back to CR this winter. And even though I won’t get much better I did get more out of it than I did the first go round. Maybe you will at least get a chance to be with professionals that can monitor you and see what’s what. Tests? I can often get into the cycle of discouraging thoughts that more testing isn’t going to help me. But, it doesn’t seem that your newer doctor thinks that these tests are unnecessary. They may lead him to making some conclusions you haven’t yet heard or thought about.
If you don’t like him, walk away. You’re allowed. Maybe you need to look farther afield. We just drove 4 hours in the pouring rain there and back to see my cardiologist. It’s a BIG hospital, she’s near retirement. I had to get an appointment specifically with HER and not just the Fellow. My doctor spoke with us for 40 minutes and we all came to the conclusion........ I need more tests done. Hopefully you’ll come to the best conclusion for you. Whether it’s another doctor, or just forging ahead with the tests and CR. Don’t overthink your predicament just yet. If the trouble is not knowing for sure if doing these tests is going to turn up something new (or not turn up something new!) take a breather. Doctors orders last awhile, so you do have time to decide. I dislike all these tests, but I’m not quite ready to settle for where I am, if I can even decrease my oxygen needs a little bit, enough to travel more easily, it might be worth it, though I haven’t decided! Praying you will receive more assurance. 💕❤️💕 God Bless
Peggy Whitecotton Alina.. I am so sorry to hear of these issues. I know how you feel about a new cardiologist. I make a ... Read more
Peggy Whitecotton Alina.. I am so sorry to hear of these issues. I know how you feel about a new cardiologist. I make a 6 hour drive every 6 months to the heart institute (where I had surgery) because that's my security blanket, The first thing he will ask me is. "how many days a week are you exercising?" He keeps telling me I need to be doing at least 30 min 3 to 4 times a week. Which I don't always do. He says it will strengthen and condition my heart. I too. have spells of shortness of breath due to what he calls a stiff heart muscle and sometimes obtain fluid which I take lasix as needed. But I find that exercising does help my breathing and does wonders for me, I just get lazy... Thank you for your update. keep us posted.
Peggy Whitecotton Alina. what part of NC are you living in? I am originally from NC and have 3 sisters living there. On ... Read more
Peggy Whitecotton Alina. what part of NC are you living in? I am originally from NC and have 3 sisters living there. One of them goes to Duke for her medical needs,
Shannon Gray OH, Alina... I am so very sorry you are facing this. This journey is giving you so many twist and tur ... Read more
Shannon Gray OH, Alina... I am so very sorry you are facing this. This journey is giving you so many twist and turns. I do believe what Kate is mentioning is true...the dr. Is trying to find out more information to hopefully better help, and that may be a very important step. All the while continue looking for a dr that you feel more comfortable with. Thinking of you every step of the way.
Alina FH Hi, everyone.
Thank you, thank you, THANK YOU for all your input and support, and kind thoughts and ... Read more
Alina FH Hi, everyone.
Thank you, thank you, THANK YOU for all your input and support, and kind thoughts and ... everything! I REALLY appreciate it! I was just so down, I needed to share and you all have given me back way more than I ever hoped for. Thanks for talking me off the wall, everyone!
So, this is the deal that made everything sour for me: I first went to see this other cardiologist in the same clinic who was recommended by a friend who works in the medical system. The first cardiologist was definitely the wrong start for me: she seemed overwhelmed by the weight of my case, and she literally did not know what to do with me: she asked ME what tests I think she should do and whether I think I should be on this medication or the other. So, I knew I was in trouble, because I wanted someone to understand me, my case, my history and be able to manage it all.
So, I researched for another cardiologist and ALL the roads lead me to this second cardiologist who happens to be in the same clinic (and even share the same office manager AND nurse with the first one). I thought long and hard that "boy, this is too close to the first one. Maybe I should not go literally quite next door." But this guy had ALL the best reviews (4.9 stars out of a 5 after hundreds of surveys). I also asked my primary care doctor for a recommendation without telling her ANY names. She came up with his name, too - completely unprompted by me. So, I thought well, I have to take the chance of him thinking it's strange to come to him rather than his co-worker, and do what I feel is the best for my heart and go to him. I have been waiting for 3 months to see him. And when he came in, he came in almost swinging, somewhat offended that I cannot make up my mind and visit way too many cardiologists and what can he possibly do that no other person before him has done. So, in my mind, he WAS offended in a way that I am "bothering" him for a consult when I was seen in the same clinic and I should have continued to go there.
AFTER his initial bout of ... whatever that was (he even called my previous doctors "dumb" for being shocked that my heart disease is so advanced at such an early age - he said it's a no brainer that my heart condition is so advanced given my HoFH ...) ... so, after all that hollering, he calmed down somewhat and he said that given what he has read in my records so far he thinks 1, 2 ,3 , and 4 - he outlined several 'guesses' and he said he would need to do more tests to be sure. And he, too, thinks I have a hardened heart muscle that I need to exercise more often to make it more supple. He, too, thinks my heart retains fluid - things I didn't hear before.
I DO agree that the tests ARE good and I love that he does his own tests to get his own information and baseline before he maps out the journey (I hope he WILL map out a journey), but his initial approach might have eclipsed any good intentions he might have gotten afterwards.
We are emotional creatures, after all, and I respond equally good to good, respectful bedside manners as I do to perfectly superior medical knowledge.
This is why I am so conflicted: I WANT to trust him, but he pushed me away with this "WHAT DO YOU WANT?!" (yes, all caps and yelling) attitude he expressed in the beginning.
Sorry for the long post and the sob story - but I wanted you all to have some background.
The plan for now is indeed to stick with the tests. Find out the results and wait for his interpretation of them. And I will absolutely keep you posted.
Peggy, I am in the Durham-Chapel Hill area, and I AM going to Duke. But so far, unfortunately, Duke has not wowed me. They might have great doctors, but the system is incredibly overloaded and the doctors are incredibly rushed. I have never in my life visited a doctor with an hour glass on the table. My primary care doctor (who I really like and who I think is really competent) tells me Duke gives her 20 minutes per patient. If we're in the middle of a consult and the 20 minutes are up, she walks out and tells me to schedule another appointment. ALL appointments come with a time tag on them.
I am sure we ALL understand efficiency and we all hate to wait for the doctor, but their appointments are NOT void of wait, despite this constant rushing of patients. And there are many other examples of things that have happened to me with them that are simply unbelievable given their reputation.
Anyway - another story for another day. :-)
Good health, everyone, and kind thoughts right back at all of you!
Rita Savelis Alina, you so needed to express your sadness and disappointment. I hear you. Smart highly-qualified d ... Read more
Rita Savelis Alina, you so needed to express your sadness and disappointment. I hear you. Smart highly-qualified doctors don't always come with great manners or any manners at all. Many are assholes. It's hard to not feel in conflict with them.
There are probably only a few doctors out there who feel comfortable with your difficult case. Many probably get disappointed about their incompetence and/or inabiltity to help, but can't show it.
This last guy sounds like a smart qualified disrespectful asshole.
You need to vent about him, and wish things were different.
They should be different. Your heart and body should work properly. It's unfair.
But this doctor may know what he's doing.
We all know that you are smarter than a lot of doctors and very on top of your own case. You must be a scary patient to some of them because of your knowledge.
This is another bend in the road, and after all that you've been through, it is disheartening.
You are embracing the sadness and the unjustness.
And then you will move forward, as you do.
Please continue to share all your stories. We need them. I need them.
xoxoxo
Anna Jones Alina, it's the "God Complex" that the good doctors get. So many people are constantly telling them ... Read more
Anna Jones Alina, it's the "God Complex" that the good doctors get. So many people are constantly telling them how "wonderful, smart, talented, great" etc. that they come to believe they are better than mortal. Most of them lose their empathy. Most have the worst bedside manner. Sometimes the patient just has to remind themselves that they need the expertise, will see the doctor for only a teaspoon of time, and they are not marrying the doctor.
Sometimes even with a lot of self-talk you cannot cure what is wrong with your doctor/patient relationship, and then you move to another doctor with your answers firmly in place so that the new doctor can go from there.
I am currently having a similar problem with my cardiologist. He diagnosed me with severe regurgitation. He said I didn't need surgery yet. Based upon my symptoms (of heart failure) and how I feel I told him that I DO need surgery NOW. He sent me to his "friend", the surgeon who was supposed to talk sense into me, and me out of surgery. But instead the surgeon said I need surgery very soon and not to wait. This put my cardiologist in a snit and he has been refusing to release my medical records and test results, and my prescriptions are all messed up so that I cannot get my medications and he won't find the time to straighten it out. I have tried waiting out his snit, but since it isn't abating I am going to ask to be transferred to a younger cardiologist in his practice. Such is life. Doctors are human too even if they think they are Gods.
Civita Fahey It really irritates me that some physicians can be this way. I work in healthcare and I cant imagine ... Read more
Civita Fahey It really irritates me that some physicians can be this way. I work in healthcare and I cant imagine working with physicians that treat patients in this manner! I know that specialists have that "God Complex"but really there is no need to be patronizing or even rude to patients.. if you could take of this problem yourself, then you would and wouldn't need him! I truly feel that if you aren't happy then try to find someone else.. I go by the old joke that those of us who deal with doctors every day have : What did the guy who graduated last in his medical school get? An MD! so, when they make you feel uncomfortable and are asking you what to do, then move on.. We still live in a health system that we have a choice, after all its your life! I agree that we don't get as much time as we would like with our doctors but unfortunately Medicine has become a business and its hard to find any system that isn't working in the same manner, but, I do feel there are caring and competent physicians out there all in the same package.. we shouldn't have to take one or the other. best to you. Alina
Alina FH Rita, Anna, and Civita - thank you SO MUCH for your thoughts! Trust me - I savored every word and tal ... Read more
Alina FH Rita, Anna, and Civita - thank you SO MUCH for your thoughts! Trust me - I savored every word and talked some sense (and patience, of which I have little) into my brains!
Rita, your sentence ("This last guy sounds like a smart qualified disrespectful asshole.") made me laugh so hard my face hurt! :-) Thank you for your humor, always! All the best to all of you!
Peggy Whitecotton Civita.... You are so right, a lot of doctors do have a "god complex" as a nurse I have seen many. We ... Read more
Peggy Whitecotton Civita.... You are so right, a lot of doctors do have a "god complex" as a nurse I have seen many. We use to say that the Neurosurgeons and heart surgeons were the worse. One hospital I use to work in, we had a surgeon we use to call "God." Whenever he came on the floor someone would say here comes God and we nurses would scatter. because no one wanted to do rounds with him. but I will say this he was one of the best surgeons in the Hosptial and he knew it too,,,
Civita Fahey I think that's the issue Peggy, they are good and know it.. but, they should still have compassion fo ... Read more
Civita Fahey I think that's the issue Peggy, they are good and know it.. but, they should still have compassion for their patients, if they didn't learn that in Med school, they should.. We had one that was accepted to Med school at a prestigious university when he was a freshman in college.. we called him Golden Boy. hahaha.. no bedside manner, but, out of this world surgeon.. but there are also the ones that really don't know it all and use that attitude to make up for it, so we patients unfortunately are the ones that need to see through it..
It's been two years now, since my very involved heart surgery, and what I consider my re-birth, really. Every year on my anniversary, I read through my story ...Read more
It's been two years now, since my very involved heart surgery, and what I consider my re-birth, really. Every year on my anniversary, I read through my story which I wrote right after being released from the hospital, and I look at the pictures I took during my recovery year. It is a therapeutic remembrance, and it also puts things into perspective: if I am still worrying now, I need to see how bad off I was and how far I have come and I need to appreciate the life I have managed to live since then. The time I got after this surgery is bonus time which might not have happened without it. For that, I am forever grateful!
I will always be a heart patient. I wish I could be here today and tell you that you get your surgery and you're done worrying and you're done thinking every day about whether your heart is healthy or not. I don't care who your surgeons and your cardiologists are and how wonderful they are (and they are truly miracle workers), you will always wonder “is my heart truly all right?! Am I truly OK?!” At least I do. I wish I could say you're done seeing doctors and getting tests done, but it would be a lie.
But have you ever seen those trees that grow up crooked in the forest?! A brand new tree springs up, and they are straight and pretty when they're a sprout. And then, they hit a rock in their growth towards the skies, and the rock is right there, on top of them. But do they die?! No. They learn to grow crooked and around the rock. Their trunk bends around the obstacle and eventually they come back springing towards the skies, again, when they have grown past it. They will always look more interesting than the others which grew uninterrupted and straight. They will be crooked, but alive, and strong. Maybe that much stronger. This is how I feel, too: not perfect, not worry free, not whole but alive and with so much to live for!
Although there are plenty of things different for me, different than before the surgery and different than a healthy person, I can say that I feel like I do have a full life. I work full time, I travel, I walk (although not very fast, nor running), I eat what I want to eat, for the most part – a proof of this is all the 10 lbs I gained over the past year! I could be skinnier (I am 115 lbs) and less out of shape, and I wish my heart could do more to support that plan. Ever since I moved to lower altitude, my energy level is much better than when I lived at 4000+F. I still get tired, but I feel like I last longer than before.
How I have felt since surgery seems to be changing constantly. Some things have been the same since the first day after surgery (the numbness in my left arm, the shallow breathing, the raspy voice which sometimes completely vanishes, the difficulty remembering common words, the occasional stutter, the very weird blood pressure), but some things are new: the shortness of breath when I exercise or walk up the stairs is still lingering on, which is surprising to me, the occasionally high pulse (even on a beta blocker), the dizziness and ringing in my ears, the feeling of the earth opening up under my feet and having no stability at all. A new thing is also the fact that now, I can hear my valve even when it's not completely quiet in the room. My valve had been so quiet for the longest time after surgery. But now, I can hear it, and my husband, who would be sitting near me, can, too. It took almost two years to get to hearing it and I cannot tell you why that is.
Every now and again, I have this claw-like feeling in my chest, like someone is squeezing my heart really strongly. I take my blood pressure when that happens and it is as weird as it always is: either 160 over 50 or 130 over 40 – so nothing really strange there. I am not sure why this happens and this unsettles me, but so far no doctor has been able to explain this to me.
I do know that my heart is not 100% strong and healthy, and I have learned to accept that, like I said: I will always be a heart patient and I will always have to keep an eye on it. Diagnostically, they continue to find one thing or another: I have aortic insufficiency and my new aortic valve is still leaking (mildly, though). They also think that my body gets about 64% of the oxygen that it needs to get, something they call cardiac impairment. More tests are needed to determine this for sure and to determine the cause, so more will be scheduled.
I take 10 pills every day plus a shot every other week (I am treating my HoFH along with my heart disease). Sometimes I wonder what it would be like to just stop it all and just see what life would be after that. But I know that’s not possible. I know there is no life if I stopped this all. And I love life way too much to experiment that …
Another constant since my OHS is my relationship with Warfarin. Although I have learned to trust it more, and although I have been on a dose now for a year or so that has not needed to be changed because I am constantly in range, I do always fear that something (anything, really) will make the INR dip low or sky-rocket. I have learned that antibiotics make it sky-rocket and apples do, too. I have also learned that since on Warfarin my liver responds faster to other liver-poisoning drugs (like antibiotics or even pain killers).
I have stayed away completely from spinach and kale, but I still eat peas, green beans, broccoli and salad several times a week. It was hard to get used to this “consistency” thing – you have to have the same amount of greens every week. It was hard to figure out a cup of veggies every day in my diet, but I have learned to think in weeks instead of days when it comes to Warfarin: if I have those 4 cups of greens (or whatever it is) in a whole week, I call it good. I don't obsess so much over what I eat every day, or with every meal.
My life with INR is like that night-light you have in your bathroom that shines from under the door at night: you know you're settled for the night and it's nice and quiet and ready for slumber, but there is one light which will not turn off, as a reminder that it's not completely dark, after all. But you can still sleep through it, nonetheless.
I have not cut off a piece of any of my fingers anymore, and with an INR range of up to 2.5, I fear internal bleeding less and less. I am still very much afraid and paranoid about infections. I have become your worst nightmare germaphobe, but I can live with that. I get frequent UTIs which throw me in long psychoses, obsessing terribly over whether the infection will get in my blood stream!
My relationship with alcohol has changed, too: I drink mostly non-alcoholic wines and beers (yes, they make them!), and I have an occasional glass of something “real” which will always raise my pulse and make my heart beat so hard and fast I feel like it will pop my chest open. I don't like that feeling, so I stay away from it … I don't think this is a huge sacrifice since I feel great when I don't have alcohol – so, it's all good. Coffee is much the same as alcohol: I have only had decaf for two years now and some weeks I have no coffee at all. I seldom crave it anymore.
I keep telling myself that this is all a process, and things will change as my body changes and ages and develops. And it's true. I expect my symptoms to be different over time and changing, to some extent. But every time something new happens I wonder is it just a change? Or a change for the worse?! I wish I had a doctor I could trust again to explain all these to me, but not yet.
I have moved to NC late last year and the doctors that went through my heart surgery with me are not near me anymore. I tried to see a cardiologist in my new home town and it was a bad start. She did not get what I had gotten through and the seriousness of my heart condition at all. Now, I am starting anew with another cardiologist, but it will take a while to see him. I have learned that bigger cities means bigger waits to see people and do tests. I worry about not having a heart doctor at the moment. Having one I trusted and one that was involved was my security blanket. And I miss that dearly. I never underestimate the peace of mind that comes with a good doctor who knows you and gets your condition. Knowledge has always been power in my opinion, and I miss that!
But aside from all these symptoms and fears, I think life is good. With every morning when I see the sky first thing, I thank God and my surgeon for giving me another day. Life is what you make of it, they say, and with my limitations and nervous worries and all I am trying to make a good one. I love my husband, I love my family and although far from them geographically, I try to stay as close to them as Facetime and Skype allow. I am there for my team at work, sometimes for 10-12 hours every day (I work from home now, by choice, not because of a disability). I am planning trips and looking forward for more camping this year. There are so many trails unexplored out there! Life goes on, obstacles and all, crooked body and all. We just need to find that clear blue sky to rise towards. The rest is a miracle!
You can read about my surgery and hospital stay in this blog which I wrote two years ago: http://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html
For a visual journey (through pictures) of my first year, you may scroll through these shots: https://wanderworldpics.shutterfly.com/22637#22659
Much health to all and much hope!
"In the end, when we look at our life, the questions will be simple: Did I live fully? Did I love well?" (Jack Kornfield) "The proper function of a man is to live, not to exist." (Jack London)
Anna Jones Hi Alina, I've read your journal. Trauma is an amazing thing. If it doesn't kill us, it makes us neu ... Read more
Anna Jones Hi Alina, I've read your journal. Trauma is an amazing thing. If it doesn't kill us, it makes us neurotic :-) You've earned the right to worry and to be mysophobic.
My husband is also on Praluent. His cardiologist said it will take a long time to see his cholesterol levels drop. So far we haven't seen any changes in his numbers. Has it been working well for you?
Best wishes for happiness and health.
Phyllis Petersen Just wow! You have such an amazing spirit! Moving to another location across the country and trying t ... Read more
Phyllis Petersen Just wow! You have such an amazing spirit! Moving to another location across the country and trying to set up with new doctors is something of a nightmare. I had a sister here who is a cardiac cath nurse, but I needed my own team. Right before I came to Tucson from NYC, my right knee really crapped out, but I couldn't do anything without getting settled first. That December, I decided on an orthopedist, called his office, and found out he was retiring, although he was pretty young. Turns out he had some health issues. I see him once and he hands me off to someone else (who has now moved to NC!). I needed PCP and cardiac clearances for surgery, but had neither here. I hadn't had an echo in several years, because I wasn't thrilled with the cardiologist I went to after mine moved away. In order to get in quickly to a cardiologist, I made an appointment with a Fellow at the hospital my sister works at. When the cardiac imaging doctor saw my echo, he called and then took me over as his own patient. In that I was very fortunate. I have tremendous faith in him. I found a PCP (who's quite a drive from me) that I trust too. I wish you all the best in finding a team you feel confident with, and finding a path through your incredibly difficult health issues, so that you have a full and long life ahead!
Alina FH Hi, Anna, Praluent worked like a miracle for me. My numbers would NOT come down below 300+ before Pra ... Read more
Alina FH Hi, Anna, Praluent worked like a miracle for me. My numbers would NOT come down below 300+ before Praluent and after the first month on it (after 3 shots) the total was 230. Now, it’s been right under 200 (198-199) since 2016. My old cardiologist was still not happy with that (and with an LDL of 145), but I’ll take these numbers any day - they are the lowest I have ever seen in me. However, I do know that it works at a different speed for different people. Is he also taking a statin and ezetimibe?! I take all three. The best of luck to your husband and I hope you see results soon.
Phyllis, what a roller coaster! I am glad you found at least one doc you like. I can definitely relate. I dread hunting for good doctors and really getting comfortable with them. It is so imporatnt to have the ones who yiu feel that they have knowledge and heart! The best to you in your new location, also!
Anna Jones Alina. He has really bad reactions on statins. We've tried them all. I don't think he has ever bee ... Read more
Anna Jones Alina. He has really bad reactions on statins. We've tried them all. I don't think he has ever been prescribed the ezetimibe... but we've gone through so many medications it's hard to keep track. I'll ask his Cardiologist about it. Thank you.
Kate Watson Yay Alina, happy valversary! I still remember your surgery and early recovery so well, I was so worr ... Read more
Kate Watson Yay Alina, happy valversary! I still remember your surgery and early recovery so well, I was so worried for you but your spirit and gratitude amazed me then and continues to do so now. I know it was really hard for me to find a new cardiologist when we moved at first- I absolutely loved my former one. I ended up going to one initially who I felt was very careless. He told me I wouldn't need echocardiograms ever again unless I wasn't feeling well, and also told me to take 1600 mg of advil a day for a pain issue- despite the warfarin! Though he was recommended to me, I trusted my instincts and went to a new one and he's been really great. So I'm glad you are trusting your instincts too and I know you'll find the right one again, and the right medical team. It just takes time of course. I am still fairly obsessed with my heart on a regular basis and those worries about infections and INR don't seem to go away for me either. I'm glad I'm not alone in all of that. I owe you an email but in the meantime, know that I think of you often and am always grateful for your friendship. Big hugs and wishing you many more healthy years ahead! And as always, thank you for sharing your beautiful words with us :)
Barbara Laurie Alina, 💕I will never forget your courageous journey! I often waited impatiently for your next post ... Read more
Barbara Laurie Alina, 💕I will never forget your courageous journey! I often waited impatiently for your next post during your recovery. Thank you for your words of encouragement and hope. God Bless friend. 🌿💕🌿
Rita Savelis Alina, Yes, yes and yes. I hear and relate to all of it. Thank you for being there, thank you for tak ... Read more
Rita Savelis Alina, Yes, yes and yes. I hear and relate to all of it. Thank you for being there, thank you for taking the time to share. I needed you, and there you were! xoxo
Shannon Gray Happy 2 Year mark! I can remember having not yet joined this site, but sitting in my hotel room leadi ... Read more
Shannon Gray Happy 2 Year mark! I can remember having not yet joined this site, but sitting in my hotel room leading up to my surgery and reading your post surgery updates. I was a wreck...but reading of your strength, courage, and wisdom helped me the morning I walked in for my surgery. I will forever be thankful. As always, your writing is beautiful.
Civita Fahey What a beautiful and true statement of what its like to be a heart patient. happy anniversary.. I wis ... Read more
Civita Fahey What a beautiful and true statement of what its like to be a heart patient. happy anniversary.. I wish you many more .
Alina FH Thank you, everyone. Your warm and heartfelt (pun not intended) words made me cry. Thank you, all, an ... Read more
Alina FH Thank you, everyone. Your warm and heartfelt (pun not intended) words made me cry. Thank you, all, and you, too, have kept me going! I have learned SO MUCH from your stories, not just about medical stuff, but also about strength, patience, and resilience. I am so blessed to have known you in my journey! Thank YOU, for sharing, also.
Barbara Wood You've been through much, I admire your tenacity ( & your wonderful talent for writing!) ...Happy an ... Read more
Barbara Wood You've been through much, I admire your tenacity ( & your wonderful talent for writing!) ...Happy anniversary!
Tracy Simmons What a wonderful post - so very well stated. Congratulations on your anniversary.
Wanda Mroz Hi Alina... you are still a hero in my book for all you’ve been through and how far you’ve come. ... Read more
Wanda Mroz Hi Alina... you are still a hero in my book for all you’ve been through and how far you’ve come. You are correct ... always a heart patient. I also thought when my valve got fixed I’d be fixed and done! I wasn’t thinking of warfarin or INR levels or heart rate issues. I still go to rehab third phase exercising 3x a week... and at times I’m like a walking encyclopedia telling people about OHS, valve fixes, cardioversion and ablations. Always a heart patient. Truer words were never spoken. I am glad you are doing good... for all of your problems and what you’ve been through, you’re doing fabulous. I think of you and Barb all the time. Both my hero’s. Prayers and huge hugs... happy anniversary!! 💞🙏🏻
Here we are at the end of another year. I know I am among friends here when I say: “Isn't this an accomplishment all in its own?!” I know I feel grateful ...Read more
Here we are at the end of another year. I know I am among friends here when I say: “Isn't this an accomplishment all in its own?!” I know I feel grateful at the end of every day, not only at the end of every year, for being on the right side of the dirt.
I am so grateful, yet, again, to all those in my medical team who have worked so hard over the past two years to get me here and give me a full life and allow me to continue to build memories.
This past year has been a busy and tough year for us, personally. Not as tough as other years and not as tough of some of yours, I am sure, but it had its challenges.
It was the first year when I gave myself freedom to travel: we flew just about anywhere, from Utah to Miami, we drove from Salt Lake to LA and from Salt Lake to Raleigh, NC. We traveled by almost any means of transport known to man: a car (daily), a bus (in Mexico and Belize and Honduras), a ship and many boats (in the same countries), a plane (to Michigan and Montreal, and Miami). Through it all, with its usual hiccups and worries, my heart did fine, overall. Most days I am just grateful for coming out of bed and putting one foot in front of the other. The rest of what I can actually accomplish is the cherry on top.
I believe that out of the 52 times I checked my INR this year, maybe four or five times it was out out of range, but only once below my range – most other times I was slightly above it. My fear of being on Coumadin has diminished somewhat. I won't say it's gone, but it is much lessened. I don't worry about bleeding to death anymore, but I still worry about clots in my valve, or infection, and I still worry about what the Coumadin does to my liver, with everything else I am taking for my HoFH (Cholesterol disease), as well. I keep a close eye on my liver enzymes for this, as they tend to rise when I add anything else new to the cocktail (like antibiotics, for instance).
After a job loss, we decided to move across country from Utah back to what I consider my American home, in North Carolina. We lived in our camper for two weeks, till we reached our destination and we bought our new house. I took my cholesterol shots and continued to check my INR weekly in the camper. My drug regimen, my blood pressure machine, and my 'poking' devices are either traveling with me or my trips are scheduled as such to not miss my 'scheduled appointments' with them.
My neuropathy is still alive and well in my left arm, and my breathing is still restricted from whatever damaged my chest during the surgery. I still get tinnitus, and dizzy and still forget common words and stutter when I am exhausted. My voice is still mostly raspy and on the quiet side. All are symptoms, I think, from the “pump machine”, or from whatever happened during surgery. I still have aortic insufficiency (AI) which will potentially be there for the rest of my life. My blood pressure is mostly strange (big gap between the two numbers) and lately more often than not elevated – and this is another page in the book of my heart disease that I am just now starting to explore: constant high blood pressure. But all this does not stop me from setting goals and living the life I still want to live. Edited. These are all what I consider small prices to pay for a new lease on life.
My ejection fraction is set between 57 and 65%, which is good, even for a non-heart patient. So, even with an OHS and a heart attack behind me, my pump is good – for which I am so grateful!
I still have a full time job, I travel, and I love and share my life with my family, my friends and everyone else who wants to hear my story. I think my life is fuller now, with all the edits I have been forced to make, than ever before. There is almost always something new I learn about me, my abilities, or lack thereof. It never gets boring around here. Every day is a new challenge and the end of one a new accomplishment. I treasure and cherish every single breath!
I moved to a new area of the country and now I am just starting to meet my new doctors – as you all know, it's going to be a process – for them and me to learn each other. So, that is my newest challenge.
In 2017, I managed to not rush to the ER for heart issues (yeah!). I went into ER just once, for a UTI with very high fever. I originally went to the Urgent Care and they sent me to the ER because they could not do blood cultures to see if my infection had passed into my blood stream. They wanted the ER doctors to do that, to ensure that my infection is not affecting my valve. It was not, but that infection scared me.
As I close this new year, I think of everything I have been through as a heart patient, and I am so grateful for this disease: so grateful for what it has taught me about the world and about myself. I embrace it as my normal and I know and I want to share with you all today that there is MUCH life and much love and much hope after OHS. Life does not stop with that surgery. Quite the contrary: it is just beginning.
I hope you all have amazing teams and support systems around you! I hope you all see what a great opportunity you are given for a new, different life after you have received hopefully a stronger and healthier heart. I hope you are strong and resilient and embrace your new you's.
A special good wish for all my special heart-friends, Rita, Kate, Barb, Bob, Shannon, and Wanda – thank you for keeping us all updated and for staying in touch, as much as you can. Your struggles and your fights, your courage and patience are humbling to me, as I look for encouragement every day to push through. Thank you for sharing your stories with all of us.
This disease is not for the weak-hearted (pun unintended): you are all warriors of a good fight. Keep at it, and remember: you are all 'invictus'!
A Happy and Healthy New Year to all!
Phyllis Petersen With all you have been through, and are going through, I'm amazed and inspired by your spirit. May th ... Read more
Phyllis Petersen With all you have been through, and are going through, I'm amazed and inspired by your spirit. May the New Year bring you joys beyond measure!
Bob Fessler You are so inspiring and write sooooo well. I'm jealous of your linguistic abilities. I travel a lo ... Read more
Bob Fessler You are so inspiring and write sooooo well. I'm jealous of your linguistic abilities. I travel a lot but you put me to shame this year (only one trip to Maine to marvel at the fall colors and eat lobster). I did have surgery 5 months ago so I'm cutting myself some slack. Have a great 2018 and remember to smile. We are so lucky! So glad to hear from you.
Rita Savelis Jealous of your travel! Jealous of the beauty of your writing! So inspired by how you move forward! ... Read more
Rita Savelis Jealous of your travel! Jealous of the beauty of your writing! So inspired by how you move forward! Filled with love for you, one of the friends I would not have "met" without OHS and the valve "facebook".
Wishing you a 2018 of joy and peace.... I think you already have both, but even more. xoxoxo
Barbara Laurie Travel is, for me, travail- so I’m glad you have enjoyed so much Alina. Your flexibility and powerf ... Read more
Barbara Laurie Travel is, for me, travail- so I’m glad you have enjoyed so much Alina. Your flexibility and powerful outlook serve you well😄 Happy New Year friend, I know you will continue to find the Joy and gratitude. There aren’t many days that go by where I don’t think of you. God Bless you in 2018. I pray I have the enthusiasm you do to fave the future❤️🎉xxx
Shannon Gray Beautiful, Alina! And can I say how excited I am that we are only a little over 2 hours away from eac ... Read more
Shannon Gray Beautiful, Alina! And can I say how excited I am that we are only a little over 2 hours away from each other now. Your outlook is inspirational and your friendship a treasure. Many blessings and happiness for 2018!
Lilly Black Happy new year Alina....and many more! I would like to hear more about your experience with tinnitus. ... Read more
Lilly Black Happy new year Alina....and many more! I would like to hear more about your experience with tinnitus. Does it come and go? If you read my journal of October 30 has your experience been similar? What did your doctor tell you about it? I have a doctor appointment tomorrow to discuss tinnitus and other things. Would like to hear from you. Take care!
Alina FH Thank you, everyone! May 2018 bring EVERYTHING on your wish list, and then some! Bob, I did not fly a ... Read more
Alina FH Thank you, everyone! May 2018 bring EVERYTHING on your wish list, and then some! Bob, I did not fly at all during my first year from surgery, so you flying coast to coast after 5 months is amazing! Shannon, we need to figure out how we can meet in the new year. I cannot wait! Much health, everyone! I think of all of you daily! Hugs.
Just read your post on your tinnitus experience: my tinnitus is not quite as long as yours. I have had it since my surgery (22 months ago). It was worse right after surgery, but it is still here today, just not as often. It comes and goes on its own and there is nothing seemingly I can do to make it come or go away - it comes when I am working out, or just sitting in one spot, when I have music around me turned up a little louder, or when it's perfectly quiet, too. Not sure what's causing it. Most times, I also get light headed with it. I get migraines often (used to before surgery, too), but when I get tinnitus, my head does not hurt, necessarily.
My cardiologist and surgeon thought it was a side effect from the surgery and from 'pump head' (I have other symptoms of that, as well), and they told me there is nothing they can do for it. I just moved to another state and my new cardiologist thinks it could be vertigo, so she scheduled me for a vertigo test. I am on the fence about going through with it, because I don't have most of the vertigo symptoms. I do get light headed (also since surgery), but the room is not spinning with me, like vertigo would cause. I don't have other symptoms of vertigo, like stomach sickness and I have not hurt my head at all anytime that I am aware. So, I am not sure whether I'll go ahead with the test, but that's what she suggested for now.
My tinnitus is a sharp or a deep noise in one ear (it never comes in both), and it lasts for anywhere between a few seconds and 20-30 minutes. It is overwhelming, as I cannot hear anything else in that ear at all while it's going on. I can be light headed with it, and I must sit down or lean against something, or it's not accompanied by light-headedness at all. I don't do anything for it, and after a while it goes away on its own. After the surgery, I used to get it daily and it would last longer (up to an hour sometimes). Right now, I get it maybe 3-4 times a week.
I hope this helps. Good luck with yours! Let me know if you have any more questions. Thank you!
Lilly Black Thank you so much, Alina. I appreciate your detailed reply. I still have the tinnitus, and have had ... Read more
Lilly Black Thank you so much, Alina. I appreciate your detailed reply. I still have the tinnitus, and have had no relief. Like you, I mostly only feel it/hear it when I am still or lying down, but it can get quite loud, and very annoying! I understand your skepticism about following up on vertigo. I have had vertigo previously and like you, this doesn't feel like it. It started out with extreme pressure in my head, and extremely painful left ear. So I thought it may have been an ear infection. In addition, I have been soaking both ears with hydrogen peroxide however, I only have tinnitus in my left ear. I also thought the tinnitus was a prodrome to migraines, because they have been coming on frequently. But it also feels like a deep ear problem, because the ear is tender. That area of the head and ear consists of many nerves, so it makes it difficult to pin point and I have not lost any hearing! So who knows! I took antibiotics and it didn't do anything for me. Recently, the pressure in my head has subsided some, but even that comes and goes but not as severe. It's strange, I'm at a loss! I hope my Doctor, an Internist, can figure it out. I will let you know....my appointment is tomorrow. If he cannot, then I will contact my Cardiologist. Take care....and thank you!
Kate Watson Happy new year, many wishes for good health for you in the coming year, and happiness in your new new ... Read more
Kate Watson Happy new year, many wishes for good health for you in the coming year, and happiness in your new new home. So grateful for your friendship and for these other awesome heart valve friends here.
Alina FH Happy New Year, Kate! Grateful for you, as well!
Lilly, funny you should mention this: my tinnitus i ... Read more
Alina FH Happy New Year, Kate! Grateful for you, as well!
Lilly, funny you should mention this: my tinnitus is mostly in my left ear also - I probably get it in my right ear maybe once for every 10 times I get it in the left. Strange. Since your ear feels tender (mine doesn't), maybe it is something deep in the ear?! Mine feels more like blood pressure out of control, or a sudden change in pulse of blood pressure might cause it, since the light headed feeling comes with it ... I'll continue to ask doctors and see if one happens to solve the mystery. All I know is this all started with the surgery. :-/
Good luck and I do hope they figure it out so you can be on your way to relieving this pain! Keep in touch!
Helen Daw You are an inspirational to most of us here and I loved reading your story!!!
Happy summer, everyone!
I hope all of you warriors are having a good summer, with little complications and surprises and much strength and hope for better ...Read more
Happy summer, everyone!
I hope all of you warriors are having a good summer, with little complications and surprises and much strength and hope for better days to come!
I have passed the 18 month mark from my surgery this month and it feels surreal. It sounds like a very long time has passed, and yet every day I am remembering clearly the days when I hated that stupid spirometer and how 12 people lined up in my room every day to encourage me to blow that bubble all the way up. I remember how I slept sitting up for six months without ever turning in my sleep. I remember when I could not tie up my shoes because I could not bend over. And I remember how much I fought to get my INR above 3 right after surgery (it never was higher than at the low end of 2). I remember all these things and more daily, if not hourly.
And yet, life moves on, with or without our approval.
This year's been busy for us: we have gone on a cruise, visited family in Michigan and Canada, advocated for The FH Foundation on Capitol Hill in DC, we have visited Los Angeles and taken a couple of camping trips, too. Last year, I was afraid to leave the ground, and this year, I feel like I need to make up for it or something.
And, gratefully, life has been good, health-wise. I still have lots of reminders of my heart condition and previous surgery, and I have renounced myself that this is the life I live now. The life I lived THEN, in the rear-view mirror only.
Compared to what some of you have gone through my reminders are nothing but nagging little buggers. My left arm is still numb (maybe even more than right after the surgery), my chest still feels “crunchy” at times (like it's made of small little pieces mosaic-ed together, rather than one large shield), my voice still disappears when I am tired or after a long meeting where I have to talk a lot, my BP is still funky as absolute hell, puzzling all doctors and nurses, and I still freak out daily about what my INR is, although it has been pretty reliably anywhere in between 1.5 and 2.2 lately (my range is 1.5 to 2.0, but that is impossible to keep). I now have new “phantom pains”, my surgeon calls them, in my chest: I scratch the left side of it, and I feel the motions of the scratch in my sternum, or the other way around. He said they are normal and they might never go away. Oh, well, welcome to my new weird, right?!
I still stutter and look for simple words when my pump brain takes over, but the words finally, slowly come to me and I move on. The surgeon said: “You were on that pump for half of a day! There is no way that would not have affected you! And I am sorry, I really am, but there was nothing I could do to prevent that! Pump head is a real main side effect of this surgery.” (he said second only to depression).
Altitude bothers me more than anything else. My breath is very shallow, still, most days, and I cannot have any alcohol or caffeine when I am at altitude (which is where I live), otherwise my pulse goes cowboy on me! I am also easily tired. More than what you would expect a person my age, with the amount of work I do should be. But I slow down, sit down and rest when I need to. When I was recovering from my surgery someone on this site (I apologize for not remembering) said that I'll see a time “when I'll have good days, not just good hours” - and that has been true this year. I might have bad hours every day, but overall, I have good days, sprinkled by bad little hours. Nothing worth committing to memory, really.
All in all, there has not been much I wanted to do that I have not done this year: I traveled, gone to concerts, cooked under the stars, hiked (small inclines), worked full time, and I have not (knock on wood) visited the ER once, even.
I have had an echo done in the beginning of this month. My cardiologist believes I have AI (Aortic Insufficiency) because my On-X mechanical valve is still leaking “moderately”, he said. He also believes that this is where my weird BP comes from, and the fatigue, as well. My surgeon believes that my echo “is absolutely perfect”. He says the valve has a leak built in it, so it will prevent clotting. He also sets my leaking at “mild” instead of “moderate”. He also agrees that the mild leak causes the AI, but he is not concerned about it, because the valve is not in the same shape it was when he had to pull it out. It is immensely better. My ejection fraction is at 65 (it was 70 before the surgery, but around 50 after the heart attack I had right after the surgery), so it's better than it's been in the past. The surgeon ensured me that he “never wants to look at my heart again”, and that he did everything he could to ensure that he fixed me good. And for good, too.
Before the surgery, the surgeon would let me listen to my own heart through his stethoscope, and there was a murmur, and a weird swoosh right after the second beat. All that is gone now, when he has me listen to it. It is amazing the difference. The beats are louder and completely clear. There is a very faint swoosh after the first beat, but he said that is just the strength of my hear pumping the blood. Nothing after the second beat (where you would normally hear noise from a leaking valve).
I thought this surgery would change me completely, and it would make me patient and slow me down. I am still, underneath the slight more patience I have with my body, the same spaz I was before. I cannot even stay put and just watch a movie. I cook, or clean, or write, or blog, or knit, or something else when the movie is going on. I am still too quick to judge and still godawful principled. I won't let go of silly things. I wish I'd change, but I guess it takes more than OHS to do that. At least for me.
Like I said: I have, however, learned to be more patient. I have a totally new understanding of my body and I know when it tells me it needs a rest. I could not have imagined my life without coffee in the morning, or a glass of wine now and again before bed. But my body revolts when I give it these things, so I am used to giving in to what it wants. And it's better this way. The small sacrifices I make for it are nothing compared to what most of you handle.
One thing I have learned: life is much fuller now than it was ever before. Every breath counts differently. Every heartbeat in the night is a whisper of “thank you” to the world, God and my surgeon. Lastly, to my own body. My body feels more, my pores are more open, more sensitive, more keen to absorb the world around me. I used to think we are tone-deaf to life after we've seen a things or twelve. But not anymore. I am hypersensitive to everything happening around me now, and grateful for every sunset, every raindrop (I live in the desert), every full moon. The OHS experience just placed a much, much greater value on my life, as a whole.
And I have learned another thing: whatever your limitations and your quirks, and your new-ness, don't forget to live. Go out there and live the life you have today, which is the only guarantee. Walk that trail, eat that food, drive that distance to see your best friend, fly to Europe and wander the old streets, get that puppy and walk him, have a picnic under the stars. Whatever moves you, go find it. As far as we know, this life is it. In stitches and between more or less regular heartbeats, we have a duty to ourselves to fill it up with memories. Mostly good ones, if we can control it.
Much health, strength, and many hugs go your way. For those of you just now entering this journey: much courage and peace! Once you find that peace, that confidence that God, medicine, and your body's innate willingness to live will carry you through, you're crossing over. And you'll do fine. And trust me: you won't be able to wait for the fullness of the life on the other side.
The best to you all!
Steve Farthing May you continue to improve over the next year!
Bravo! Thank you for this. It is so very inspiring to read about your journey💕
Lilly Black Truly inspiring and thanks for sharing ✌️😊
Rita Savelis Oh, lovely Alina! Thank you always for your wise, well chosen words, your understanding of life.
Ma ... Read more
Rita Savelis Oh, lovely Alina! Thank you always for your wise, well chosen words, your understanding of life.
Many good days and many good hours is what I wish for you.
It would take more than OHS to change you from the amazing person you are! xoxo
Jennifer McInerney Thank you for writing such inspiring words. I was having a down morning and your story helped me reg ... Read more
Jennifer McInerney Thank you for writing such inspiring words. I was having a down morning and your story helped me regain my gratitude for what I have and what I can still enjoy. God Bless you
Sandy Laine Greatly appreciate this sharing of your experience.
Barbara Laurie So glad you wrote Alina. Well said. As I've told my friends, no surgeon can fix my spiritual heart, a ... Read more
Barbara Laurie So glad you wrote Alina. Well said. As I've told my friends, no surgeon can fix my spiritual heart, and so any change in me can be attributed to God! So glad you are well, and your heart of gratitude is uplifting. I think of you often. Heart to heart sister. 💕🌿💕
Hi, everyone,
I wonder if you all have heard of this blood test called a BNP. WebMD talks about it here: http://www.webmd.com/heart-disease/brain-natriuretic-peptide-bnp-test#1.
It is supposed to measure whether there is any stress to the heart, and can indicate heart failure, of any degree. The normal range is 50-100. Mine came back as 285.
My cardiologist said that if it is not above 400, he doesn't worry about it. He said that the fact that it's elevated "slightly" (although in my mind it's a lot) might just be because of my previous aortic stenosis and because of what he suspects to be my current aortic insufficiency (post surgery, still).
The reason he did this test is because my feet swell up a lot, pretty regularly nowadays. He said that this value does not indicate that my feet swell because of my heart, because the value is not "high enough". He is still puzzled as to why my feet swell up, but he says it's not from my heart. I am just worried that I have some stage of heart failure and we're overlooking it. My heart numbers (BP in particular) have not been 'normal' since the surgery.
My question to you all is: have you heard of this blood test? Have you had it done? What are your values?
Thanks so much.
Much, much health to everyone!
A brain natriuretic peptide (BNP) test measures the amount of the BNP hormone in your blood. BNP is made by your heart and tells how well your heart is working.
Cathleen Weed Yes it's automatically tested at Cedars Sinai during all pre-op and follow-up visits. Amazing to watc ... Read more
Cathleen Weed Yes it's automatically tested at Cedars Sinai during all pre-op and follow-up visits. Amazing to watch the numbers change. Just another reality check about how much our hearts go through ❤️
Alina FH Cathleen, do you have any insight whether this value (285) is worrisome, or considered 'normal'?!
Cathleen Weed There are many factors that can increase BNP.
BNP is a neurohormone that is released from the heart ... Read more
Cathleen Weed There are many factors that can increase BNP.
BNP is a neurohormone that is released from the heart into the bloodstream when your heart is having to work harder. It's a natural response by your heart to actually help your heart. They even make medications with a synthetic form of BNP to help your heart function better (seems weird, I know). The aortic insufficiency would do that to your numbers. A-Fib can also increase numbers. High blood pressure can do it. Kidney function too. Anything that puts an extra workload or pressure on your heart. That's why the numbers would have to be even higher for it to be considered heart failure. During heart failure the BNP skyrockets. So I'm sure they will be watching your numbers carefully since you are right on the cut off point of what they would consider a sign of your heart beginning to respond to whatever is happening. Do you have access to your BNP levels in the past? Especially pre-surgery?
Alina FH Cathleen, thanks so much for the great info. That's definitely in line with what I could find online, ... Read more
Alina FH Cathleen, thanks so much for the great info. That's definitely in line with what I could find online, except that 285 seems high to me and I don't know whether that is realistically worrisome or not. have access to all my tests from years ago, but BNP is not in any of them. They did it just once, last year, after an ER visit when I was dehydrated and dizzy. It was 116 then. That was about 5 months post-op. Thanks, again.
Hi, everyone.
This might be a ramble, but we'll see ... We'll give it a try.
A year ago today, I went back to work after a 3 month medical leave - the longest ...Read more
Hi, everyone.
This might be a ramble, but we'll see ... We'll give it a try.
A year ago today, I went back to work after a 3 month medical leave - the longest leave in my life. It's been a year of ups and downs, of successes and losses, of falling down and picking myself back up to move right along, of learning how to walk and stand up straight again, of sorts, of learning who I am and who my new body wants to be anymore. It's been a year full of fear, guessing, loss, but also hope, many accomplishments, many a milestones. It's been a year of love and support from you all, from my friends and mostly from my family, especially my husband. Needless to say, most of this year felt like a roller coaster ride, and I feel like it's still spinning.
A year ago today, when I started work, I could not wear my seat belt as I drove to work. The one hour (two ways) daily commute exhausted me. I could not work more than 4 hours a day, when I first went back, for about a month. After those hours, I would come home and nap. I still slept sitting up for 3 more months after starting work last year. I could not carry my computer bag on my shoulder, nor my purse on my back. I had a dolly where I stacked both bags and my lunch bag and walked into the office pulling the dolly behind me. I used a handicapped tag, to park close to the building, so I won't have to pull that dolly from very far.
Now, all these things seem part of my past. I carry all my bags on my back, I sleep laying down, twisting and turning every which way I want. I don't nap every day anymore, and I work anywhere between 8 and 10 hours every day.
I took a whole year sabbatical from flying anywhere, after my surgery, and I am glad I did that. It gave me plenty of time to recover, and to build immunity where I was not stressed out about the germ exposure on planes and in airports. I just started flying again a year after my surgery, and so far I have been on a cruise, to Canada and lately to see my mother-in-law in Michigan (so, three flights) in the past 3 months. I still get tired - who doesn't?! - but it's not as often and not as severe as it was last year. Most days, I flirt with the idea that I am just like any other human around me. But there are some things that still remind me that I am a heart patient.
I am still nervous about my INR levels, although lately they have been within range more often and not. I still watch closely what I eat, as I will for the rest of my life.
My left hand is still numb and tingly. I still get dizzy at times, and my BP is still very odd (high gap between the 2 numbers). I still cannot exercise without running out of breath even when I just walk fast (no jogging). I do know now that altitude affects me a lot, and I do have lots more energy and I can go longer, exercise more when I am at sea level. I live above 4000ft, though, so this is not ideal.
I still get paranoid every time I get an infection (teeth or UTI) that it might break my valve and I might need surgery again. I still wear my medical bracelet, which I will, probably, forever.
I balance a cocktail of about 11 drugs (about half of them are OTCs) every day, plus a anti-cholesterol shot for my FH every 2 weeks. This is my new daily menu. I still monitor my BP at home several times a week.
I still have my handicapped sticker on my car, but lately, I feel like I am cheating when I do use it.
I still have what it seems a thousand doctor's appointments every other week: between my regular doctor, other specialists he refers me to for other things, my dentist and oral surgeon, my cardiologist and all the appointments for tests that he schedules, my yearly surgeon appointment, my INR appointment, etc - I think I have to leave work early for an appointment pretty much weekly.
But all in all, I go about my day just about as normal as any other person: work, chores around the house, going out occasionally, seeing friends, traveling to see family, going to concerts, gardening, making crafts, painting, pretty soon we'll be camping again - and just enjoying what is left of the rest of my life.
I am really in awe of how amazing medicine is nowadays and how much this surgery can help us carry on. I wanted to drop a line here to encourage all of you, especially the ones going in, that yes, it is a tough surgery, and it will require your full attention for a while, but that you will see full days of good times, as well. You will enjoy life to its new fullest again, and for that, you have lots to look forward to.
I have learned so much about myself in this past year, as well as about the world and my friends and family as I have gone through this amazing journey. I, for one, am grateful for it all - the good and the bad. In the end, it is all good, and it is all worth going through. I have become a stronger, more patient, and definitely more grateful person. I don't take much of anything for granted anymore. I know how much work my heart is doing with every beat: every time I climb a set of stairs, every time I wash my hair in the shower, every time I climb a steep incline for even a few feet, even when out of breath, I am grateful I made it again to the end of it.
I wish all of you just going in strength and peace, and great teams to guide you.
I wish everyone who is in the recovery stages, much progress and much patience. I hope you are all surrounded by the care and love that heart health needs.
Happy spring, and beginning of summer everyone! Stay ticking!
Rita Savelis In the end it is all good. Take care Alina. xoxoxo
pam williams What a wonderful post Alina your completely honest account of your own heart journey was so lovely to ... Read more
pam williams What a wonderful post Alina your completely honest account of your own heart journey was so lovely to read you told it how it was and still is for you, i am nearly 6 months post op avr and feeling really good,I am sure your post will bring lots of reassurance to our heart friends ,and yes like you I am so so grateful to the wonderful surgeons who give us back our zest for life take care Alina x
Shannon Gray Please write a book, Alina! Reading your words just makes my heart feel better. Sending you many hugs ... Read more
Shannon Gray Please write a book, Alina! Reading your words just makes my heart feel better. Sending you many hugs from your heart sister!
Marie Myers Great post! Recovery is truly a journey...
Barbara Laurie As part of the alumni of "Spring 2016" I am so very happy you've found your legs under you again. It' ... Read more
Barbara Laurie As part of the alumni of "Spring 2016" I am so very happy you've found your legs under you again. It's always amazing to read about or see pics of my fellow heart ❤️ classmates doing well. You story,Alina, is especially poignant knowing the surgery you went through, your rough recovery and your strong outlook towards life with you FH. It's why you inspire me to insist on pushing myself towards some small, but "I remember this" activities. You never gave in, you never gave up. I hope your work is fulfilling and your vacation time even more so! 💕🌼🌿
Alina FH Thank you, everyone. You are all too kind.
Shannon, you are so sweet. I will make sure I will let ev ... Read more
Alina FH Thank you, everyone. You are all too kind.
Shannon, you are so sweet. I will make sure I will let everyone here know if and when the book happens. Thinking about a couple, actually. Thank you for the encouragement!
Dear Barb, YOU are MY hero - make no mistake about it. Yes, I started earlier than you, only slightly, but your story helped me push through my recovery. Thank you, and everyone else for sharing it so honestly.
We are all stronger because we have learned from one another. Many hugs!
Kate Watson Thanks for sharing as always, Alina. I agree with Shannon and do hope you write a book. Maybe we ca ... Read more
Kate Watson Thanks for sharing as always, Alina. I agree with Shannon and do hope you write a book. Maybe we can all write a book together in which we share our journeys, as they are all so different :)
Alina FH Hi, Kate. Great idea. What a good read that would be for every patient! I hope you are doing well. Th ... Read more
Alina FH Hi, Kate. Great idea. What a good read that would be for every patient! I hope you are doing well. Thinking of you, always.
Wanda Mroz Hi Alina! Great post. Yes a book sounds like a plan! I'll give you my two cents! Lol. You've com ... Read more
Wanda Mroz Hi Alina! Great post. Yes a book sounds like a plan! I'll give you my two cents! Lol. You've come so far it's amazing. Where in Michigan were you? Darn... would have been super to somehow connect!
Yes we do inspire one another with our struggles and successes... you certainly have! Be well... be strong... be happy! You deserve. Enjoy the holiday! 💞🙏🏻
Alina FH Hi, Wanda! I thought of you when we were in Michigan. We were in Kalamazoo, where my husband is from. ... Read more
Alina FH Hi, Wanda! I thought of you when we were in Michigan. We were in Kalamazoo, where my husband is from. I hope you're doing well. Enjoy the Holiday, also. Much health to you!!
Things have been somewhat busy lately. Lots of changes, and still learning my new body, even after a year of OHS. I guess, to some degree, we always keep re-learning ...Read more
Things have been somewhat busy lately. Lots of changes, and still learning my new body, even after a year of OHS. I guess, to some degree, we always keep re-learning it every day, no matter what we go through. Sheer old age would force us to, I hope.
About two weeks and a half ago, we got back from our week-long cruise. The whole time we were there (Caribbean Sea), I was thinking maybe I overdid it and maybe a week was just entirely too long for my very first long trip after my surgery. But it proved to be just right.
One surprising thing about the cruise was that I was not very tired, like I am used to being where I live. I chalked this up to the altitude change: I live at 4000ft or higher, and when I went down to sea level (quite literally), my heart surely felt it. I could walk in the heat without panting, and climb stairs and not be out of breath. My pulse never climbed beyond 90, even after walking in the 90 degree weather for half hour or more, while it goes above 100 even at rest in the mountains. So, that experience was interesting.
When I got back from the cruise, I fell sick with a cold almost the very next day. I coughed and have been congested now for more than two weeks. For the whole year since OHS I have been terrified of getting a cold or infection because: how are the cold meds going to affect my INR?! can I take anything?! will the cold make my lungs infected and will that infect my heart?, etc - it's been sheer paranoia for a year. Well, now that it's been here and almost gone, I have survived it and from what I can tell, there has been no infection. Just the regular common cold: I took Coricidin and Halls, and Robitussin, and I drank lots of mint tea with honey and lemon, for comfort. And my stitches never came undone although the incredibly strong convulsions made me fear that. So, it's OK to have a cold, I guess!
Another thing that's been kind of up and down has been my INR levels. I thought I had them controlled but for some reason, since The Holidays or so they keep trending low. I keep not eating greens and they still hang out within my range, but on the low end. So, the nurse keeps raising the dose to allow me to eat my normal diet, but she is not raising it enough, I don't think, because the number is never over the high end or at the high end, it's always below, even when I eat no greens at all.
I have a friend who says he needs more Coumadin in the winter than the summer, so I was wondering if you all Coumadin patients see that as well. I have been adjusting the dose and going into the clinic weekly or bi-weekly now, and it seems like it would be late in the game for going back to weekly checkups, but there you have it. We're still playing catch-up with the numbers.
I hope and pray that everyone approaching surgery is calm and peaceful and has found the medical team they can trust. To everyone recovering, much strength and optimism!
To all my old time friends - thanks for always standing by me.
Health to all ...
Patricia Garcia Alina 2 years and 3 months later and I have times when my INR is to high or low. I have my own INR t ... Read more
Patricia Garcia Alina 2 years and 3 months later and I have times when my INR is to high or low. I have my own INR testing monitor that helps and I test weekly, but I check once a month at the lab. Not sure if you do self testing.
Wanda Mroz When I first was on Coumadin after surgery, it was hard to regulate my INR. it just started to level ... Read more
Wanda Mroz When I first was on Coumadin after surgery, it was hard to regulate my INR. it just started to level out when I was able to come off of it. Last summer I had to go back on it due to the first bout of atrial flutter. It took a couple of months to regulate it but then I was pretty regular and went to monthly testing. My INR is always around 2.0.. never higher than 2.4 if that. 3.0 is my high end. I prefer being on the lower end. Last month it dropped to 1.9, but I think it was due to some broccoli that I ate about 3 days in a row. That's high in vitamin k. I eat a healthy diet... salad everyday, but I keep it consistent. So I've been on biweekly draws for about a month. Especially with the new medication they are checking my INR until we're sure if it affects it. Ive heard it's not unusual to all of a sudden have it go wonky now and then. My dose is high as well because of my healthier eating.
Cathy Zuber Hi. Was on Coumadin for several years before switching to Pradaxa. Just in hospital with a new mitra ... Read more
Cathy Zuber Hi. Was on Coumadin for several years before switching to Pradaxa. Just in hospital with a new mitral mechanical valve..back to Coumadin. A cold and Coumadin are ok.. if you're on antibiotics, then Inr tests. Yes, weather, stress, lots of things can affect the Coumadin levels. Hang in there
Robert Osmachenko Not sure about the coumadin but I had high hemoglobin and red blood cell counts 20 pts over max so I ... Read more
Robert Osmachenko Not sure about the coumadin but I had high hemoglobin and red blood cell counts 20 pts over max so I had a phlebotomy (blood letting;). It worked!
My question for you is about travel insurance. Did you get hosed on insurance costs for your trip?
Alina FH Thank you, all. Patricia, I do self test, when they move my clinic appointment to a month. But lately ... Read more
Alina FH Thank you, all. Patricia, I do self test, when they move my clinic appointment to a month. But lately, the number has been lower so they call me in to keep adjusting, so I go every week till I can balance the diet and the drug, again. Wanda, my range is 1.5 to 2.0 and it hangs around 1.7-1.8 without any greens!! So, I want it to be over 2 so I can eat a salad now and again and not worry about it. I only eat iceberg lettuce, which is lower in vit. K, when I do eat salads. I eat a mostly vegan diet with ocassional fish, but no greens lately. Normally, I would have a serving of greens about every day. Robert, I am not sure I understand the insurance question. We did get insurace on the cruise just in case we had to cancel, and the insurance also would have included being air lifted and brought to land if something would have happened at sea. It was $100/ person, and we did not use it, as everything went smoothly, but it gave me peace of mind. I hope this answers it, but let me know.
Kate Watson Glad to hear this update, as I coincidentally just emailed you last night! :) So glad to hear you we ... Read more
Kate Watson Glad to hear this update, as I coincidentally just emailed you last night! :) So glad to hear you went on your cruise and enjoyed it. As for your INR, do you feel you are more active than you were previously? My INR starting dropping despite no change in my diet, and my nurse said that it's likely because I'm more active, and now that I'm almost a year out, my body is healing and back to normal (or as close to normal as I will get). So maybe that is affecting it too. I had my dose bumped up a few months ago, but it seems pretty stable since. I continue to eat greens on a daily basis, either in my smoothie, or in salads. That INR is a weird thing sometimes and definitely seems to be affected by more than just Vitamin K!
Rita Savelis That gosh darn INR! I go up and down and it's a rare month that I go longer than a week between blood ... Read more
Rita Savelis That gosh darn INR! I go up and down and it's a rare month that I go longer than a week between blood tests (2 yrs later). I keep hoping to be in that cool group that does blood tests once a month... There is so much that affects INR that it is virtually impossible to keep it all in check. Those who are stable are stable not because of anything they do. Their bodies just react that way (lucky guys, I'm infinitely jealous). Yes, temperature can change INR, but how to control every element in your life?!?
I really think it's okay for you to eat greens and to eat whatever you want in moderation.
Almost any doctor will admit to all the weird things that happen around INR that can't be explained.
You know as much as they do now.
I wish you peace of mind in the crazy INR world.
Take care, Alina.
Clare Auten INR is a crazy thing. I do usually go a month between checks but I was a year out when my INR dipped ... Read more
Clare Auten INR is a crazy thing. I do usually go a month between checks but I was a year out when my INR dipped too low and i ended up in the hospital for 3 days until it came up and then i had to test daily, at a lab, for about a week. Eventually back to monthly tests. Lots of things can affect INR including exercise. Over the drugs can also make a difference. So, I usually call the office if I have a change in something and sometimes have to get tested before the month is over or change a dose. I would go back to your normal diet and they can adjust the dose. Right now I am on 4mg on Monday and Fri and 5mg the other days. I do get my warfarin as 2 mg tabs (how my surgeon always prescribes it). That way i can take any dose they tell me (i cut one to make a mg tab) so it is easy to change from one dose to another. Hope that makes sense.
Congrats on surviving the cold. I actually had pneumonia this winter with no effect on my heart. Only adjustments to warfarin due to antibiotics.
Take care.
Alina FH Thank you, Rita and Clare. Clare, I usually ask the doctor, too, for any medicine I add and they eith ... Read more
Alina FH Thank you, Rita and Clare. Clare, I usually ask the doctor, too, for any medicine I add and they either shrug or they tell me to ask the pharmacist. I check this site myself, and it seems pretty reliable, so far - https://www.drugs.com/drug-interactions/warfarin,coumadin.html.
I do eat everything in moderation, like Rita says, but I do stay away from really high vitamin K things (kale, spinach, dark lettuce) and I am allergic to most animal products (meat, dairy, eggs). Everything else is fair game but when the INR is at my lower end, I eat no greens at all. I just wait till I bounce it back up till I eat greens again. I am slowly accepting that this will always be just a little bit difficult to balance and thanks to all of you for sharing. I feel less alone. Rita, hoping for monthly checks!! Hugs.
834 medications are known to interact with Coumadin. Includes aspirin, Colace (docusate), Coreg (carvedilol).
Lynda Ruiz I also have a live at a high elevation - 5000 and with Cops breathing is difficult. Recently put on ... Read more
Lynda Ruiz I also have a live at a high elevation - 5000 and with Cops breathing is difficult. Recently put on full time oxygen but here in Dallas area breathe well. Know breathlessness here is not oxygen deficiency.
I am really almost 42. But I like to think that today, my heart is one year old.
I am lucky – I get two birthdays, like most of you here. And my heart ...Read more
I am really almost 42. But I like to think that today, my heart is one year old.
I am lucky – I get two birthdays, like most of you here. And my heart will always be almost 41 years younger than my whole body.
A year ago today I was not looking beyond that day. A year ago today, I could see nothing but darkness beyond February 11, 2016. Just uncertainty and darkness. It was a cold, foggy, quiet day and we started the day early. The day before, I had gone to the hospital for pre-op stuff and it scared me a little (yes, I am joking – it scared me to my wits!) All the warnings about how I would feel “after”, all the possibilities about infection, how I could not sit up on my own, how I had to breathe even with a cracked chest, how I won't be allowed to open my own doors for months; all the education done by the surgeon about how difficult my circulatory arrest would be. How it could render me stupid if my brain craved the oxygen. They were unbelievable pieces of information that made me feel like an experiment. I mean, how do you not fall apart when they tell you they'll stop your heart, cut into it and freeze it?! Then, replace a couple of its parts and rewire the rest?!
But there was something in my heart (no pun intended) that was bigger than all the warnings, larger than life itself. There was a reassurance and a peace that I could not even believe myself. I was serene, composed and calm (for those who know me, these are all things I am not, on a regular day). I was confident that this had to be done and I had the best team on my side to do it. Somehow, from somewhere, I got this reassurance. I cannot teach it. I cannot tell you that it comes in 2 lb packs at my grocery store, but I know that somehow, through fear, and prayer, and family holding hands together, and an incredible amount of hope, I found this peace.
So, on that February 11th day, I walked into the hospital on my own two feet, with husband by my side, to have my chest cracked, my heart opened and frozen, and eventually returned back to life.
I sometimes sit and ponder upon all the bends in the road, all the bumps, all the highs and the lows I have been through in this past year. Even now, every day feels a little bit different than all of the ones since February 11th at 2 or 3 AM when I woke up from surgery, nurses hovering over me telling me “Alina, you had a big operation!”. I remember those few minutes right after I came to: I felt like a little kid, peering from a small house out through a smokey window, with people looking in. Very eerie.
Funny how I got a new heart during Heart and Love Month. I went in for an aortic valve replacement, to begin with, and possibly a double by-pass. I walked away with my aortic valve and my ascending aorta replaced with an aortic graft composite (which includes the valve), with a repaired aortic arch and four bypasses. And just for safe measure, I had a heart attack while I was in the hospital, after the surgery.
And the long road towards recovery started only after I stood up from all that. Every day, I think back and I remember something about this year's journey.
I remember my first steps in the ICU – I thought they were smoking dope when they told me the day after surgery that I must make an effort to stand up and walk. Loopy as hell, with 100 machines hooked up to me and tubes coming our from everywhere (one or two in my neck, four in my abdomen, my catheter, IV), my first walk around the ward, then my breathing exercises, and the pain from my tubes – that was the worst of it, folks! The pain from those wretched tubes – I thought it would kill me! But I must tell you one thing: do not argue for the tubes to be taken out, no matter how bad it hurts! I had one in me for about 18 days after surgery – they sent me home with it. But they never had to do a puncture for built-up fluid, and my effusions healed nicely. I am grateful to that painful tube and that PA who talked me into keeping it in.
Then, there were the long days of trying to figure out how in the heck to sleep. I slept sitting up for months – definitely something to get used to; but I eventually became so tired that I didn't care anymore. Then, after several months, I slowly lowered myself down. Then, there were the fights with the insurance company who wanted me back to work in a month, even when the doctor recommended at least 3 months of recovery. Then, there were the ups and downs of figuring out my coumadin dose; then, the ups and downs of figuring up the dose of my beta blocker. Then, the skewed BP and pulse numbers – which are still skewed today.
Then, the OCD I developed about being clean and not touching anything in public. Seriously – I used to laugh at people who used hand sanitizer, and now I practically drink it. There were the occasional visits to the ER or Urgent Care, too. The sleepless nights when a tooth hurt and I was thinking my infection will attack my valve. It didn't.
Rehab was in there somewhere too. I thought I was going to throw up on my first day there, when they made me walk very slowly on a treadmill for 5 minutes! When I graduated, a couple of months later, I was walking 45 minutes and hardly breaking a sweat. But that could have been the coumadin – that thing makes me cold, to this day.
Then, the going back to work with people smiling and politely telling me I looked great, when I knew I didn't. I got down to 95lbs and I looked like a pole with stuff on when I went back. Plus, my skin was gray. I learned from a heart book I read this year that OHS patients have a gray complexion, because the heart pumps oxygen weakly right after surgery, and the main organs (liver, kidneys and brain) get the oxygen first with the skin being last. I was gray for a long while after the surgery.
There are literally hundreds of things I have been through this year that come to mind every day that make me wonder how in the heck do I still stand on my feet?! Things I never felt before that now I am used to as part of who I am: the dizzy spells, the weird double vision spells, the forgetful pump head and the stuttering, the hoarse voice, the wild dreams on pain killers, the permanent “Charlie horse” feeling on my numb left arm, the shallow breathing, the tightness in my chest, like a shirt two sizes too small … the blood popped vessels in my eye, the bruises right after surgery, the weirder than weird BP values …the fear of bleeding to death from coumadin, and the even greater, more horrid, overpowering and permanent fear of blood clots interfering with my new valve ... and I could go on for a whole day …
It's also been a year of trying to get back to normal. My normal is my work, my husband, my travels. I remember the travels this past year, full of fear and emotion, but also more vivid, more acute, filled with life, because every one of them was another achievement towards that elusive “normal. The mountains, the rivers, and people I met feel more real than before. I take them in and internalize them all more acutely than ever. This is what is important, for me, that, crutches or not, I get out there and live life. I smile at precious things, I frown at ugly ones, I walk, I see the sky, I love, I hate, I do what makes me human. I owe it to my doctor and to God who both put me back together to do my part and show them that their work was not in vain; that there is still life in this beating heart and curiosity in my brain, and a drive to discover.
It's really been a guessing game, every second of every day since February 12th of 2016, when I started my life on this “other side”. Every day, I discover a new feeling in my body, a new pain, or numbness, or betterment, even. Every day, I am amazed at what medicine, but mostly at what very brave people can do to mend hearts. Every day, I visualize what went on in my chest and how these bionic pieces are now working with my heart to keep me alive.
It's amazing how much you learn about yourself and your body when you're listening. This past year has been a journey into that, for sure – into listening and paying attention closely and re-learning my body and who I am to some extent. I took all the freedom and symptoms from before for granted. But now, every single thing means something and it gets me closer to my core.
I don't hear my valve click, but I do hear my heart beat very strongly (stronger and louder than before) when it's quiet at night. With every beat I am walking closer and closer to my end, and I am aware now more of that end than ever before. I don't want any of these beats wasted. I want them full of meaning. Every precious beat is a gift. I want to sign a 'thank you' note to God for every beat I hear in my ear every night.
I still think of what happened every second of every day. I asked an OHS friend how long it took him to just never think about what happened in his chest, after having his aortic valve replaced. He said about 3 years. It's a long time, I say, but in a way, I never want to be forgetting it. I do hope that one day I will surprise myself with “Ha! I did not think of my bionic heart at all today.” but I am not rushing that day … Just like this year has taught me: one step at a time, in due time.
Today also ends my self-imposed ban on air travel. My first flight since before the surgery will be in a couple of weeks and we're shooting for a warm cruise. A little shy and nervous about it, but I am willing to let go a bit. I am ready to pack up with what I've got, the good and the bad, and head on to living life. It's the reason why I was given a second chance: the show must go on.
The toughest question I get asked is “are you feeling better?” Or “Are you 100% yet?”. If this year has taught me anything is that “100%” is an elusive number. I don't care who you are and what your life or health looks like, but none of us is ever 100%. But this does not stop us from living, does it?! I just want to scream at the top of my lungs that I am alive. Anything else is just bonus. I don't judge the way I feel anymore. When people ask how I am, or if I have a good day, I now always say that “Any day when I am alive is a good day”. And really, I mean that. From the wholeness of my heart. People look at me weird. But OHS has shaken me up to the point that my frame of reference is completely changed than before – I am more grateful and more aware. If I had to pick two words to describe me now, these would be them.
Just like river water, we are never the same person we were even a second ago. We are just different. But nonetheless, we owe ourselves to move on, eager to meet the next “different” us.
I heard it for years in yoga that we just inhabit this body, it's not ours, we just happen to find this host to carry us through this life. We're responsible to keep it clean and safe and sane, just like we would any abode. But I have not truly believed that till my heart stopped and got rebooted and I came out of it and read my surgery report and really bowed down in humility that this body indeed does not belong to me. And I am grateful it was given to me to care for … I hope I do it proud!
You will go through this and you will learn so much about you, first and foremost. About what makes you tick (literally). About how strong you are and how fragile and emotional you are, too. My dad always told me that heart patients are emotional – I have found this to be true. This site is proof of that – you all have big hearts and juggle big emotions. I have learned so much from you all. I also have learned that I am more emotional than I like to admit. I blame the heart for that.
You will also learn a lot about so many of the things that we cannot control. Especially, you will learn to trust: trust in God, trust in your doctors, your nurses, your family (even when they don't do the dishes just the way you like it, they are there for you, make your recovery easier, and keep you alive).
You will learn a lot about people, in general. About compassion or lack thereof, about caring and about science.
I have tried to live every second of the last year very much present and very much aware. I listen to my body more now. I know what it wants and when it wants it. I never ever put anything first before my body: if my body says I am tired, I stop. I left a job I loved because I was not able to close the door at 5 and just relax and give my body a break. I did not know how to relax before a year ago. Well I am glad to tell you – I love this relaxing stuff now. Some days, I am a total sloth – I just read, or paint, or knit, and let the dishes or the laundry wait another day. Some weekends are just lazy cat weekends with lots of comfort food and naps. Whatever I need, I give it to myself.
I have finally learned what the airlines tell us in every flight: put your own oxygen mask first, before you help someone else with theirs. In other words: you have to care for you, first, before you can be of any help to others.
I cannot believe this day has come. I cannot believe I have truly lived for 366 days (it was a leap year, last year) and muddled through this new me and have lived to tell you the tale. I was hoping that after all these days that big fog would be lifted and I would see the future more clearly. But it's not true. We can never see into the future, no matter how perfect we think our lives are. We can only see the now and here, and what we can touch in arm's reach. It's up to us whether we make this perfect, or wait for the fog to lift.
The now is the only guarantee I have, so I am permanently living inside it, cherishing it, loving it, as if it were all I got. And it is. I know you think this is a cliché, but there is no tomorrow without exhausting the now and today. This year turned this cliché into just fact, for me. The quality of tomorrow is measured only by what I put into the quality of today. So, I am trying my damnest to make it worth it.
I wish every single one of you much courage and faith. There is peace to be found and you will find it, right before your big day. And after that, there are amazing resources within your own self that will carry you through every day that follows. Trust in yourself, and trust in the power of medicine. We live in a fortunate age which is truly amazing and we are given all the ammunition to use that medicine to be whole. Not necessarily better (that's judgment), but whole and full.
And for those of you who can hear that click-clack of your valves, enjoy them! If that does not spell quite clearly “life”, I don't know what does. And isn't the sound of life the sweetest sound of all?!
Much health and strength to all of you, on my first second birthday!
Barbara Wood I'm blown away by your beautiful & wise post Alina!
Sue Sanchez Grela Alina, wow, wow, wow what an awesomely informative, humorous, inspirational, thought provoking, humbl ... Read more
Sue Sanchez Grela Alina, wow, wow, wow what an awesomely informative, humorous, inspirational, thought provoking, humbling, and encouraging post! My mind and heart were both racing, absorbing, and reflecting while reading. Thank you! I will be bookmarking it for future reference.
Alina FH Sue, thank you. I am glad my words found resonance in you. The best of days and much health to you!
Muriel Cotterill I so enjoyed your post, I am waiting to have Mitral valve repair. We have no sites like this in Engl ... Read more
Muriel Cotterill I so enjoyed your post, I am waiting to have Mitral valve repair. We have no sites like this in England. I do really enjoy reading the comments gives me lots of information.
Laurie Baglio Beautiful! So real! So honest! It was a privilege to read you words. You have come such a long way in ... Read more
Laurie Baglio Beautiful! So real! So honest! It was a privilege to read you words. You have come such a long way in 366 days. I am 12 days out from aortic valve replacement and find your words inspiring. Bless you.
Sophia Ridley Alina, what wonderful words. It's a privilege to walk with you on this journey. May your recovery go ... Read more
Sophia Ridley Alina, what wonderful words. It's a privilege to walk with you on this journey. May your recovery go from strength to strength.
Bob Fessler Alina, I've always loved to read your writings. As a guy, I think a lot of people would not expect m ... Read more
Bob Fessler Alina, I've always loved to read your writings. As a guy, I think a lot of people would not expect me to GET what you are saying. Tough and all that stupid stuff. Thanks for putting into words what you are feeling and sharing your insights. I'm not a very "put in writing my feelings" type of person so I could never do that like you but I really appreciate your ability to make me think about this journey. Thank you again.
Meg James Beautifully written Alina and I can relate to it all !! I am 44 and have a bicuspid aortic valve and ... Read more
Meg James Beautifully written Alina and I can relate to it all !! I am 44 and have a bicuspid aortic valve and a dialated ascending aorta at 4.9 they say they will do another echo this year but I am not happy with the care I am getting here in New Zealand so hopping for the best and trusting their methods ..... I wish you an even better year of your new journey and lots of living to do Takecare and love love love ❤️
Alina FH Thank you, everyone. I am glad this reached out to you. Thanks for reading and your sweet comments. B ... Read more
Alina FH Thank you, everyone. I am glad this reached out to you. Thanks for reading and your sweet comments. Bob, always great hearing from you. I hope you're doing well. Strong 💕❤💕 to all!
Rita Savelis Oh, Alina, always so wise! Always so eloquent.
Enjoy that plane ride! Love you.
Happy Valentine's!
Barbara Laurie Hi Alina, finally had the quiet time to read your post and respond. I remember so clearly your posts ... Read more
Barbara Laurie Hi Alina, finally had the quiet time to read your post and respond. I remember so clearly your posts before and after surgery... it seems just a short bit ago. Ah. Time flys. I'm glad you wrote, you've said it all so well..now don't have to write a thing later, just "see Alina's year anniversary post...ditto" ❤❤
Alina FH Barb!!!! You are sooo funny - I love THAT the most about you. So glad to hear from you, ALWAYS! Yours ... Read more
Alina FH Barb!!!! You are sooo funny - I love THAT the most about you. So glad to hear from you, ALWAYS! Yours is coming up, too. End of March'ish, right?! Love your beautiful spirit, and praying every day that you are well. ❤💕❤
Kate Watson Ah Alina, so proud of you for how far you've come. Your words resonate so true for me, I'm all teary ... Read more
Kate Watson Ah Alina, so proud of you for how far you've come. Your words resonate so true for me, I'm all teary eyed reading this. I want to give you a big hug right now. Thank you for your vulnerability and authenticity. You have a beautiful soul. PS Barb, you crack me up !
Alina FH Love back, Kate! I hope you are doing awesome.
Enrique K Hi Alina, thank you for your words of wisdom! You're truly an inspiration to everyone in this communi ... Read more
Enrique K Hi Alina, thank you for your words of wisdom! You're truly an inspiration to everyone in this community. Stay well and keep up that positive attitude!
Bob Fessler Ditto with Enrique and all the other comments.
Wanda Mroz Alina... beautiful post! And so true in so many ways. You say it so well. Happy one year dear. I ... Read more
Wanda Mroz Alina... beautiful post! And so true in so many ways. You say it so well. Happy one year dear. I wish you nothing but the best! Always thinking of you and Barb and Kate wondering how you are doing. Yes find time to relax... now that I'm retired I'm trying to learn to do just that. It's a slow process. Hugs!💞
Lynda Ruiz Beautifully written! Having given up your more stressful job, you might consider being a writer as ... Read more
Lynda Ruiz Beautifully written! Having given up your more stressful job, you might consider being a writer as you certainly are talented in that regard.