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.
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!
Today is Rare Disease Awareness Day. Mine is Homozygous FH. I am in awe of all of you who battle one of these rare conditions with a smile! Much health to all!
Four Year Anniversary
Journal posted on February 11, 2020
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.
Feb. 6 - I was blessed to have dinner with Barbara Laurie last night! It was amazing to meet her. Barb and I met on this site and I encourage everyone: if you can form a bond with anyone here, it'll be a powerful tool in your journey.
Long time, no write …
Journal posted on October 12, 2019
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.
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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“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...
February 1, 2019 - This is all the red I could find: Happy National Wear Red Day to all! This is a day for heart health awareness for women in particular, but awareness is always good for all! Happy Heart Month to all, too!
Roche CoaguChek Strips recalled
Journal posted on November 7, 2018
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
September 2018 - a great day for a Heart Walk. For all of you who cross the finish line of surviving every day: much health and much stength!
Not All Cardiac Rehab Programs Are Alike
Journal posted on August 18, 2018
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!
July 2018 - Strolling in Athens, OH and this sign looked relatable. Two movies that read well together.
Then and Now. A Path to Recovery
Journal posted on July 8, 2018
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 …
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.
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!
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!
March 31, 2018: this was SUCH a treat - meeting Shannon in person. Shannon and I met on this site which is, as you all know, an amazing support system. Thank you, Shannon for meeting me half way and sharing your stories and life with me! Much health!
Back to Rehab?!
Journal posted on March 21, 2018
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!
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!
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'!
From our hearts to yours: Happy Holidays to all and a great, healthy and happy, New Year!
18+ Months After
Journal posted on August 25, 2017
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.
I get to drive by this billboard every day. It's right off my exit. That's my surgeon. Just a sweet, daily reminder of how grateful I am to him.
Have you all heard of BNP?!
Journal posted on May 18, 2017
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!
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!
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 ...
A year and 2 weeks post-OHS I took my first flight with the new heart to go on a cruise. Here, I am somewhere on the Caribbean Sea. It was great and my heart did even better because it was not at 4000+ft of altitude. Happy and healthy journeys, all!
February 14, 2017 - a year ago today I was being moved from ICU to a regular room after my OHS. Today, I got this heart from my hubby, to celebrate. I am very moved. Happy Valentine's Day, everyone!
Random Thoughts on My First Year Anniversary
Journal posted on February 11, 2017
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!
My scar at 8 days - 2 months - 4 months - 1 year. I never used anything to treat it.
A year since pre-op cath today
Journal posted on January 29, 2017
A year ago today was a Friday, and the day of my pre-op angiogram. I was scared and felt lost. Although the procedure itself was somewhat easy, the list of problems that they found with my heart was getting longer.
Today, I am watching a movie and sipping some Montana white wine, and I am here to tell the tale. That too came to pass and I am almost at my one year OHS anniversary.
If this year has taught me anything, it is that we are always stronger than we give ourselves credit for.
The best of luck to all of those approaching surgey and speedy and full recoveries to everyone.
May God bless you all, and guide the hands of your teams!
First (mini)surgical procedure after OHS (and Coumadin)
Journal posted on January 10, 2017
Although it felt frustrating at the time, I also felt a bit dumb about this. But what can I say: I am still learning.
I had to have a tooth pulled last week. There was major decay and both my dentist and my endodontist agreed that there is no saving the tooth - it must be pulled and replaced, no doubt about it! So, they scheduled me for an appointment with the oral surgeon to have it removed.
I was very worried about two things: if the tooth is infected, I did not want the infection to go into my artificial valve. So, I knew it had to be removed for that reason, but also I was scared that once they bother that contained infection (the tooth was not abscessed yet), it might travel in my blood to my heart and there will be trouble. So I wanted antibiotics for at least a week after the extraction and I hoped the surgeon would agree to give it to me. The second thing that worried me was the bleeding. I am on Coumadin, and although my range is lower than most (1.5-2.0), I still bleed longer than before Coumadin and longer than most.
What I did not see coming (and the part that makes me feel dumb) is that the oral surgeon would not even touch me unless he knew what my INR was. He said he has people come in there with an INR of 4.0 and he cannot pull a tooth with such a high value, as there won't be a way for him to stop the bleeding. He said "anything bigger than 3.0 will have to be brought down by not taking Coumadin for a day or two."
So, he sent me to my clinic to get my INR checked that day, before I went back in and did the procedure.
My INR ended up being on the low end (1.7) and he was fine with extracting the tooth. It was a hard procedure, as the tooth was calcified into my bone and had to be cut out in pieces, I also had to get stitches to close up my gum. I bled for most of that day, but he said that is all normal. So far, no infection and yes, he did agree with me - he gave me one week of antibiotics and an antiseptic mouth wash to keep infection out.
Another thing that he did which I thought was incredibly thoughtful is: he took my blood pressure, as I told him that it's usually erratic - low and high in the same day for no reason. That day, it was high (157 over 68 - my diastolic is usually way to low), so he gave me an anesthetic with less epinephrine (or none?) so as to not elevate my blood pressure yet more.
So far, I am OK, but I was a little nervous there for a bit.
I just wanted to share this with you all, in case you are facing similar procedures and wondering what the protocol is. Do not schedule the dental surgery before you check your INR, preferably the night before or the day of the surgery. And oral surgeons can check your blood pressure but they generally cannot test your INR. So make sure you plan and check it before you go in. I had an INR number to give him from a week before, but he wanted to see an INR within 24 hours from the procedure, which makes sense.
I hope everyone is doing well and I wish easy journeys to all!
Much health and a good year ahead!
Jan. 1, 2017 - it is a glorious day, here, in The Rockies , on The First of the year. I wish everyone a healthy, hopeful, strong and happy New Year!
What a Difference a Year Makes!
Journal posted on December 23, 2016
Two years ago, right before Christmas, my cardiologist at the time called me to share with me the results of my latest yearly echo. Things were starting to get worse. My aortic valve was still shrinking, and it was 1.1 cm2 in area now. I remember his words: “I am not sure when you're going to have surgery, but if it dips below 0.9 cm2, it will be time. You're very close to that.”
A year went by, my cardiologist then retired and referred me to a new one. So, last Christmas, the new cardiologist calls me with the yearly echo results, around December 20th and says: ”It's time. Your aortic valve is now 0.4cm2, and we must operate to replace it as soon as you can. Don't wait for longer than 3 months. Tops.” I requested a repeat of the echo just to make sure they measured right. The repeat echo was done on Christmas Eve of last year. The second echo confirmed the findings: the area of the aortic valve was too small to be deemed safe, so surgery was imminent.
I am sure a lot of you relate to what was going on in my heart (literally and figuratively) around Christmas last year. I was scared. I was in a lot of ways hopeless and very, very afraid. I live in a small state (barely 2 million people), with very rare good medical care. I didn't know where to go and how to ensure I'd have the best surgeon, the best nurses, the best care possible. I didn't want to travel for this surgery, because I wanted the people who operated on me to be close by, during my recovery. I was terrified. How I didn't go into the abyss of some sort of depression is beyond me. Christmas and New Year was bleak last year. I know I was supposed to be hopeful, and part of me knew this was coming for most of my life, but this was right in front of me, staring and in the way – I could not divert it or go around it any longer. This was it.
When it was finally time for surgery, they found out from an angiogram that my heart was even in rougher shape than they initially thought: on top of replacing my aortic valve, they have repaired my aortic arch as well as replaced my ascending aorta. And if that was not enough, they also did a quadruple bypass on the left side of my heart. It felt, for a while, like my heart was hit by a Mack truck. In essence, it was!
I won't go into the details of my past year – you can always read my journal to find out how it went down and some of you already know this. But I am sitting here today, typing this and, for the first time in a long time (2 years) I feel like the monkey on my back has taken a hike.
I can now make plans, and actually enjoy Christmas and New Years without wondering what the monkey will do to me if I don't 'feed' it. It's an incredible feeling of peace and gratitude. I wanted to share it with you all, because I know some of you can relate, and for those of you in the earlier stages of your journeys, I wanted you to know that this is possible.
The tech from my last year's echo said: “It's pretty bad, but you have to wrap your head around this huge surgery a little bit, and then, you'll bounce back after a short time. I see people do it all the time.” I honestly thought she was on crack: how the heck do you 'wrap your head' around your heart being stopped and being cut in two, and parts of it being removed and replaced with God knows what? And how the double heck do you 'bounce back' from that?! Looking back at this year shows me that she was right.
I visited with my surgeon this past week. He got together with my cardiologist and they both read my latest echo together. (As an aside, if you at all can, make sure your cardiologist and surgeon have access to one another and are willing to work as a team. It's been wonderful to have them both on my side, although they don't always agree with one another.) The surgeon called me this week with his interpretation of my results, which, he said, agree with the cardiologist's opinion, too, for the most part: my replaced On-x aortic valve is doing great and he said “it will last you for the rest of your life, as long as you don't clog it.” It does still have a leak, more than what he normally sees on these types of valves, but the leak is trivial. He is not concerned about it. He said it all comes down to how I feel, and I feel great. My left ventricle (on which he placed 4 bypasses and which had an MI while I was recovering in the hospital right after surgery) is “incredibly strong” and my ejection fraction is back to around 70% which he says it's almost the number for a “healthy heart”.
I still have a very low systolic BP, which he cannot positively diagnose. He says as long as I am not dizzy and otherwise feel OK, the number won't matter much. I know the cardiologist is concerned about the number, but I have felt great, too. I do have occasional spikes in BP which I also had before the surgery, but they are short lasting. Alcohol seems to cause this sometimes, too. But that is something easy to live without, or with very little of. It is a miracle to me to not have angina anymore. I believe my first bout of angina was when I was in college at 21 and it was happening weekly, sometimes daily (depending on what I did) for 20 years now. I have not had that since surgery. This tells me my heart is now on the mend.
I have been lucky beyond belief that I have managed to go back to work after 3 months of medical absence and I have not taken many sick days since (7 months ago). Ironically, the only sick leave I took after the surgery was for stomach flu. I have had only one ER visit (for low BP and dizziness), and only one Urgent Care visit to stop a bleeding finger which I chopped while cutting up onions. I have been incredibly blessed with not only good doctors, but a great family and husband who has done pretty much everything around the house so I can rest and take it easy. My hat is off to you all who have children and sick parents or spouses to care for while you are nursing yourselves back to health. I don't know how you do that and I always pray that you find strength and health!
I have taken this past year “off” from traveling which I love, just so I will be gentle to my heart. We did take road trips but I have now flown. Being 'grounded' was not all bad. I have gotten more in touch with my crafts and they have helped me lift my spirit. I have also spent some time learning and finding new beautiful places around our home, which I never would have made time for otherwise.
My surgeon was shocked that I have not flown yet. He said: “Go out there, Alina, and live your life! This is why we did this, so you can have a good, happy, meaningful life. Go and enjoy!”.
It felt so freeing to hear him say that. And as a good patient that I am, I am about to follow orders.
As you all know, I have a new life and new routine after this surgery. I watch what I eat constantly, and I am hooked up with apps that tell me how much Vitamin K is in anything. Both my doctors always tell me that the only ONE thing that I must ensure I do to protect the valve is to 'not clog it.' I have other food allergies, too, and watching what I eat and where I eat it is almost second nature now. I don't think about having to think about it. It just happens as routine. I have 10 medications I have to take every day, for the rest of my life. This includes prescription and non-prescription drugs and supplements. I have one shot I take for cholesterol, every two weeks. I go to the clinic for my INR check every month now, and I check it at home about every week. I have a cardiologist appointment every 3 months (for now), and I meet with the surgeon after every echo (about 6 months now). It's all in my planner and every “thing” I have to do is just part of my daily routine, like brushing your teeth or doing your laundry.
One thing that still worries me are infections, because we have so little control over those. I have had an infected tooth for a while (doctor doesn't know how long, because it has not really hurt, so I didn't complain about it). They have treated it for now, to let me go through the holidays, but I must have the tooth pulled to prevent the infection for really drilling into my sinus and spreading in my body. I am more vigilant now, when it comes to my teeth – I go to the dentist for every new throb, or pain, or sore gum. I just don't want to risk some pesky bug going into my blood stream.
But outside of all these, which are truthfully my new normal, I am happy and I feel complete, and so lucky. I thank God every day for giving me such a challenge. I never knew I could do these things before I had to do them, and coming out on the other side of it is like being born again, truly. You know how a puppy scared of water feels like when you throw him in the lake and he realizes he can swim and he'll be fine, after all?! That's exactly how I feel.
For Christmas this year, I feel peaceful and healthy, despite all the limitations that I have been left with after surgery (read previous journal entries for those). I feel ready to enjoy my family, my memories and my foods and to plan for what it is ahead. After all, planning the rest of my life is quite a chore.
I know you're all fearless warriors who will ultimately conquer this feat! I have no doubt in my mind about this! And as the saying goes: “When you're going through hell, just keep going.”
Merry Christmas to all and much health and strength in the new year!
And lastly, I am sharing with you my “Open Heart Surgery Year” album – there are pictures in here when I am at my worst (not awake yet from surgery) all the way to the newest picture which I took about 2 weeks ago, with our Christmas tree. If you hate bruises and cuts, maybe it's not for you, but if you're in this journey, you'll have to get used to them: https://wanderworldpics.shutterfly.com/22602
My 'bionic' heart: you can see the sternum wires, as well as the valve and the ends of the ascending aorta graft. (hashtag)ILivedToTellTheTale
Journal posted on November 24, 2016
Today, more than any other day, I am thankful for a lot of things - my life, most of all, my husband for holding me together, my family for their unwavering love and support, friends who care. But one of the most important things this year has been this community. You all have made this year easier for me. Thank you, all, for sharing yourselves with all of us, and for being there for me, with compassion and advice, pretty much every single time I needed you. I hope God is generous and kind to all of you and He accompanies you all in your journeys. Thank you for being there and for showing me how to fight the good fight. And not in the least, I thank Adam for making all of this possible!
I hope everyone has had a good Thanksgiving and has lots of things to be thankful for! I know I do.
Today it's been 9 months since my surgery and things are well. I have no idea where all this time has gone! I know I was home for three full months after surgery, which (for someone who has never had medical leave before and never took more than 3 weeks of vacation at a time) seemed like an eternity. But now, I can hardly remember ever being home. I have been back to work for 6 months now, and it's all a routine again.
I have no words to describe how incredibly grateful and humbled I am that I am here today, typing this. Although I am not the same person, physically (in so many ways) that I was a year ago, I feel well, and I am adjusting to my new reality. Living with Coumadin is not as scary as it was in the beginning. I go to the clinic every month and I take my INR myself at home, about 2-3 times in-between my clinic appointments. My INR is usually either within the range, or higher. My range is only 1.5 to 2, so when it's 2.3 or 2.1, it doesn't concern me that much.
My left arm has been numb since the surgery, and it's actually getting worse, for some reason. Only the pinkie and the 2 next fingers were numb, and now my whole hand and wrist are numb. No idea why. My breathing is shallow (see previous post for details), but I am learning to live with it.
Believe it or not, I still have "pump head". I have days when words just don't come out of my mouth. I KNOW what I want to say, but I cannot say the words - and it looks like I am stuttering. I read that this could last for 5 years in some people.
We are trying to make some plans for a cruise or some tropical vacation for later this winter, and I am a little nervous about flying again and going into different territory, outside the range of my doctors, but ... life is short. And I want to live it. And God has been so generous so far, that I feel encouraged to put this new lease HE has given me to good use.
I already started shopping for Christmas, and we just remodeled a couple of rooms in our home. In other words: life is moving on, even after heart surgery. 9 months ago I could not have conceived I would be doing all these things in this much time. But life's a living surprise. And I am so amazed and in awe of it all!
I asked one of my friends who has had his aortic valve replaced too about 6 years ago when will I just go through ONE day without thinking about what's going on in my chest. He said to give it at least 3 years. So, I'll try to be patient and still obsess over my heart, BUT ... I want to do things, too. So, I'll push through each day, one foot in front of the other. Worry or without.
Another friend of mine asked me if I am going to yell at my surgeon when I see him next time (next month) for messing up my breathing and my arm, but IS SHE KIDDING??? The man practically killed me and brought me back to life in one piece! He gave me a functioning and better heart, and probably added years to my life. I have no words for the gratitude I owe him forever. I truly hope he lives forever and he gets to help many, many people. And I hope God is really good to him! I would not be here much longer if it were not for people like him, brave enough to fix hearts!
I pray for all of you and I hope all of you have smooth journeys, good teams and a lot of hope and faith! You can do this. Medicine is amazing nowadays. Much health and strength, and a good weekend, too!
I was reading this blog of a mommy the other day, where she was talking about babies born with genetic defects of the heart. She was saying that even after the surgery to fix the defect has passed, the baby's heart will still never ever be "fixed". It will simply be a sick heart forever and the baby and the child and adult, later on, will always have a "condition" to manage. I could not help but think that we're all like this, too, after our surgeries. We're always going to have a condition to manage. Our hearts, our bodies will never be the same and definitely never "perfect".
I know I am still learning, every day, even after 8 months, how to "read" my body and how to understand what it tells me.
I have had trouble breathing since the surgery. It's been various symptoms, but most often, I feel like my lungs need more air, but they stop before they really fill up with enough of it. Sometimes, I also feel like my lungs are "lazy", like they forget to breathe on their own, and I need to push them.
I feel this lack of enough air the most when I yawn, or I talk fast and I need to breathe in smaller spurts. I also feel it the worst when I exercise or I even climb a steep incline, or steep stairs. With exertion like this, I am truly breathless and I must stop and really focus on breathing. I breathe fast and short breaths then. It's not painful, in any way, but it's just "there".
At the past cardiologist appointment I asked him to look into my lungs, to make sure they work right. I just wanted to be sure it's not my heart that it's causing the shortness of breath, although I knew it was not. I know what heart angina and shortness of breath because of it feels like it, and this isn't it. I just wanted to see what is wrong with my lungs, if anything. So he ordered a pulmonary function test (actually several).
The tech at the testing place kept telling me I need to inhale bigger breaths, and I did the best I could, but I could tell she was disappointed. She gave me an inhaler, to make me breathe better but she said the inhaler did not make a difference. (And yes, I obsessed over whether I am even allowed to get an inhaler, for heart and coumadin reasons, and I asked about it, and she told me she didn't know but she "doesn't think a few breaths of inhaler would hurt me". It didn't. It just gave me a bad headache).
The cardiologist called today with the results. He and the radiology doctor looked at the study, as well as the many (about 4) X-rays they have done since my surgery to understand where my shallow breathing comes from. It turns out that when they put my chest back together after my surgery, my diaphragm was inserted higher under the left lung and in normal position under my right lung. So, the left lung cannot expand all the way, to fill up with air, because the diaphragm is restricting its range of "motion".
There is nothing they can do for this, and they hope it'll correct itself over time, but for right now, all I can do is keep breathing, "force" my lungs to expand, and just ... gag for air. I am just happy that the shortness of breath and the "lack of air" are not from some kind of heart problem. The cardiologist said from what he knows about my heart there is no reason for my heart to give me shortness of breath, but to keep an eye on the symptoms in case they change for the worse. He also said he does not expect the lung situation to get worse: only remain the same or get better.
And that's that, for now.
Moving forward and trying to live from one day to the next, listening, paying attention, learning the new "me" and being beyond grateful that I am here, today, writing this. And keep breathing, of course.
Much health, good hands to help you out and strength to you all. And most of all: much hope. We would be nothing without this little lady - hope - now, would we?!
Tomorrow marks my 8 month aortic valversary. I have no idea where the time went!
As some of you already know, I have been back to work for about 5 months of those 8, and I have built up my hours to where I work about 9-10 hour days now, including the one hour commute I have every day. If you had told me this when I woke up in the ICU, I would have thought you were crazy talking. But, taking every day one at a time, with its very own challenges, and putting one foot in front of the other, I have somehow made it to 8 months. Only by His Grace, I tell you! We, humans, are small miracles.
Today was my 3 month appointment with my cardiologist and I had a followup echo, too. He did followups every 2 weeks after the surgery, then spaced them out to a month, then to three, so now, he'll do every 3 months for a bit, and then go to 6 months where I was before the surgery, so I guess that'll be back to normal.
My On-X mechanical aortic valve is still in mild regurgitation, but I'll take that over 'severe'. My surgeon said at some point that it will always leak, but as long as it stays mild or even moderate to not worry about it. Since it's a mechanical valve, the area of the valve (1.6 cm2) should not ever decrease. It was 0.4 cm2 when they called for surgery, so, again: I'll take this!
My cardiologist is much more cautious and he wants to see the regurgitation go away for good. But I'll take what I can get. My left inferior ventricle is hypokinetic, which means it does not squeeze as hard as it should – the left ventricle was the place of my heart attack, way back when I was still in the hospital, after surgery. So, that part of my heart has been slowly healing, but it's still “lazy”, for lack of a better word. I am convinced that NOTHING about our hearts is lazy. They are industrious little machines!! My ejection fraction (which was knocked down to 55% right after the heart attack) is now between 60-65%.
My blood pressure is still weird: he got a 140 over 60, and he said the gap between the two is still too large, and he's concerned about it, although he's not sure what makes it so, outside of the regurgitation in the valve. He, again, asked me if I am dizzy and I am not, so he will let the BP be for now. He told me to drink plenty of water and call him or go to the ER if I get dizzy when my BP is weird.
I have had some weirdness breathing lately. Not sure why, but I feel like my lungs “forget” to breathe and I need to push them to breathe for me. Has anyone experienced this before? And not right after surgery, but after 6-7 months after the surgery? He is puzzled, but he ordered an X-ray and a pulmonary function test to figure out what it is. It happens at rest, too, but it's more evident when I want to sprint walk, or run up a set of stairs, for instance. I feel like I am not getting enough air in my lungs and I have to make an extra effort to inflate them and release the air. It's nothing like the chest angina that I had before the surgery, though, so I am really happy about that.
Outside of all this, my left arm, which was left numb after surgery (probably from the nerves they damaged trying to pull an artery out of my chest to do the quadruple by-pass), has been feeling even worse. I am not sure if it's worse, or just different. Only 3 fingers and my left wrist were numb, but now, my whole palm, all 5 fingers, and the wrist are numb. Also, the “frozen” feeling from before has been replaced with a “wet hand feeling” now. I feel all the time, like I have cold water on my entire hand, when it's actually bone dry.
I have managed to walk up to 3 miles in a day, and do fine. But I have to stroll, not sprint. Sometimes, altitude (I do live in the Rockies) is a problem and makes me more tired, and more out of breath, even by just sitting there. Heat and altitude together have been a problem for me, this summer, but I heard from many of you (thank you!) that that is something that happens to many.
I want to ask someone, anyone (doctors, patients) … at which point I stop thinking about this monkey … in my chest and just be. And just live. And just not worry about “oh, my God, is the stuff they rewired attached properly, or will it come apart any minute?! What would I do if that happens?” I want to know when I can feel 100% safe again to truly go off the grid for a whole weekend, or to jump on a plane to a foreign country and not worry that I might not get the right care (or any care at all) should I need it when I land there … I guess only time will tell, and it's going to be different for all of us.
As Rita was saying the other day, there are no guarantees, and we have to make a judgment call and just live life to the fullest – whatever that means to all of us. I tell you: even with good news from the doctor, I still worry. I still monitor myself closely. I still go through the motions of did I take my Coumadin? Did I eat too much salad today? Did my Indian food have too much turmeric in it? Did my cold meds or my allergy meds mess with my BP? And will I have another heart attack? Or did the bypasses take care of all the blocked arteries for a while? And what's that “while”? Another month? Week? Year? 10 years? It would be nice to know, but boy, so ungrateful and self important, too, to want to know.
My mom says “no one can add days to our lives. Only God.” To say the biggest understatement of the year: I am grateful beyond belief for the days He has given me so far. I will try, hard as it may be for this control freak, to leave the day count up to Him, and just worry about my next step. One foot in front of the other. Special thanks to Barb for teaching us all how this is done. Gentle hugs, sweet lady!
Many GOOD days ahead, you all! Much hope and peace to those of you just now starting your journeys. I pray for you all every night and sending good, positive thoughts to our island of hope – the heart people.
This is for those who have an INR checking machine (like CoaguChek XS) at home: has it happened to you where you get lots of errors when you check your own INR at home? I am not sure whether I got a defective batch of strips, or what, but sometimes I use up to 5-6 strips (and as you know they are not cheap!) and the machine keeps giving me an error. I thought for the longest time that I am not doing it right, but I had my nurse at the clinic watch me do it, and what do you know: on her watch, it read it in the first try. However, when I do it at home, it errors out several times (various times, each time) before it actually reads the value. I started a new bottle of strips this week and that took in the first try. But I am not sure what else could it be. I still have about half of the bottle of strips that have been problematic.
The good news is that both times when I took my machine at the clinic with me, the reading matched the clinic's reading perfectly. So, I know I can trust the reading. Once I get to it.
Anyway, just wondering if anyone else has encountered this before.
Much health to all, and I hope everyone is doing great.
I'm not going to lie to you. I am bummed. I am seriously bummed.
When I lived in NC, I used to go to the heart walk in the spring every year. I loved to be part of that event, and contribute in a small way to heart research and expenses. It was also good exercise and great meeting other folks.
Since we moved to UT, we live too far from Salt Lake City and I stopped going. This year, though, I made it my deadline to be well enough by fall so that I can go. It was today, and I was ready to get up at 5, leave my house at 7 so I can be there for the walk at 8 AM.
But ... I have been fighting some kind of sinus something or other (I don't think it's an infection, since there is no fever and the color of my sinus secretion is not green nor brown) for a week. Last night I was coughing pretty bad and I have been worried it might turn into an infection or go down in my chest. The temps in the mornings have been in the 40's around here, too, so I felt like it would be a little unwise to go out there and walk, for fear it might get a lot worse.
I am not even sure if I am medicated well, because I am not sure what I can take or how much of anything. So far, I have taken zyrtec and coricidin, as they're both deemed safe for heart patients. But my INR hiked up to 2.6 while I am taking them (normally my range stops at 2). I am seeing some improvements, but they are s-l-o-w.
Anywhoo, I am bummed that this silly sinus congestion busted my big milestone this year. It so wanted to inaugurate my Utah heart walk(s) during my surgery year.
Ah, well. One thing at a time, I guess. And now, it's time for cold meds.
I hope everyone is having a better day than yesterday.
Many hugs and prayers are going towards all of you, regardless of where you are in the process. Always.
Sept. 2016 - conquering Canyonlands National Park this weekend. This land is really THAT vast! So blessed to have had a good weekend to see it all. Thinking of everyone.
Journal posted on September 1, 2016
We talk so much about God here, and I know that I am closer to Him now, while I am walking this amazing journey, than I have ever been in my life.
I found this poem in a local magazine - the editor found it in a locker at a ski resort. He never tells us who the author is, and I have not researched to see if we could find out, since the poem is beautiful within itself.
I hope some of you would relate to it, as much as I do.
A Creed for Those Who Have Suffered
I asked God for strength, that I may achieve.
I was made weak, that I may learn humbly to obey.
I asked for health, that I may do great things.
I was given infirmity, that I might do better things.
I asked for riches, that I may be happy.
I was given poverty, that I might be wise.
I asked for power, that I may have the praise of men.
I was given weakness, that I might feel the need of God.
I asked for all things, that I might enjoy life.
I was given life, that I might enjoy all things.
I got nothing I asked for, but
everything I had hoped for.
Almost despite myself, my unspoken prayers were answered.
I am, among men, most richly blessed!
I still remember every day the words of my surgeon, on the first day I saw him in ICU. Drugged up and all, I still remember him saying “Alina, this will be a loooooonnnggg recovery ...”, and he made this gesture with his hand, as if he were showing a long, wavy and bumpy river flowing in front of me. This is what drives me, most days, when I get impatient with myself and with being pulled behind.
This month, I have reached 6 months since surgery, a milestone that was only a dream when I came out of surgery. I’ve had undoubtedly less bumps than most people on here, but I had some, and I know today that my life before the surgery will never return. But that only means that I have to learn to live the new life, for which I am grateful and humbled! I’m not missing the old life, most days, but then what would be the point, right? Onward is the only direction I know.
Reading about all your journeys and living my own is amazing to me - we’re lucky to have such great gifts: our lives, to begin with, and then our community and leaning on and learning from each other. Such a blessing. The opportunity that I have had to meet my medical team, other patients, in rehab, and all of you has been a true gift. The knowledge I have gathered during this time will save my life. I know this! This gift alone has made this journey worth it to me.
While living through the past 6 months, I’ve always thought that we all went in this thinking we’ll fix our hearts and we’ll be better. And I think some of us will do just that. But at the same time, for me, I’ve also learned that I’ll never be ‘OK’. I’ll never be “not” a heart patient. I’ll never be able to leave my house without my Coumadin, or my MedicAlert bracelet. I’ll always have just a little bit of an odd feeling in my chest. Different than before, but always a reminder. I’ll always check my heart rate and my BP almost daily, sometimes more than that. And these are all OK things. These are my new reality. I try to not label it, and just be aware of it: it’s not ‘good’, nor ‘bad’. It’s just there.
This journey gave me a new life, for sure. Not one without pain and worry, but one that is more grateful. More patient. Slower and more in-tune to my body and the world around it. I pick my battles very carefully nowadays, and I know, at the end of the day, what was important to me on that day, when I went in for OHS. For this life I am grateful and humbled, and I would not trade it for the world. Even if it will never be devoid of bumps.
We tried camping for the first time in the beginning of June - just for one night, at a campground about 45 minutes from our house, and I thought, then, that I was going to die. My heart felt heavy and was beating erratically, my chest and back were killing me, and I felt extremely tired, and fainty.
A couple of weekends ago, we tried camping for one night again. This time, we camped “off the grid”, just on the side of a national forest road, by a stream, in the middle of pretty much nothing. Lately, I have felt better and I am s-l-o-w-l-y pushing boundaries, and try to venture out where there is no cell phone signal, although in close proximity to our house (this time we were only about 45 away, too).
This second time, I felt really good. I don’t sleep very much elevated anymore, so just a couple of pillows were enough for my sleeping arrangement. I actually could go to work and not feel like I was going to faint or die the next day, too. I did get some pains in my ribs and spine and lower back, but they were probably from being in the camper bed, which is not as comfy as my own, at home. The first time I went camping, I worked for a half day the following day, and then I came home and crashed! I could not even cook, or wanted to eat, or anything, I was drained and my blood pressure was odd. This second time, I worked full days, on Monday and Tuesday and then I came home, after 5 PM and worked in the yard for about an hour and a half each night, watered plants, planted some new ones, and cleaned up rose beds. Wednesday, I finally felt exhausted! I still worked a full day, but I came home after 5 PM and crashed! It was time - my body had had enough.
We went camping this last time at altitude, again (over 6000 ft; our house is at 4000 ft), but it didn’t seem to bother my chest at all. We went for two short hikes (less than a mile), before sunrise and after sunset, and one of them was uphill, but it was not hard to do for me. No out of breath feeling, or anything - which always surprises me.
All this time, while I was out there, and in the two days following the camping trip, my blood pressure inched towards being close to normal, too. Usually, at rest and with no exercise, the numbers are odd, 140 over 40 or some such thing, but after exercising (yard work, mostly), I saw the numbers getting closer to what is considered normal - like 113 over 48 or 113 over 52. So, although I am not ready (nor will I ever be) for a marathon, yet, I think my heart wants to start moving again.
I still live with constant reminders of my OHS, of course, and I am aware that I will never be fully free from thinking about it, or adjusting my days around it. My chest is still sore; I still call it “crunchy” as I think I have the distinct feeling that it’s made of multiple pieces, and is not one, solid bone. My incision is still sensitive - I still cheat on my seat belt, as it’s too heavy on my chest. I still cannot lift much (like my computer bag and lunch box), and I still use a dolly for all my “work stuff” and I park in the handicap parking, at work.
My nerve damage in my left arm is still there and actually, I think it’s been getting worse. I have this frozen feeling in my pinky and ring finger which is constant; sometimes, my whole left arm feels frozen. My left leg is still numb, but different than my arm. It’s more like a log that I am pulling around. (they harvested an artery and a vein from my left chest and left leg, respectively, for the 4 CABG’s they did along with my aortic valve and ascending aorta replacements).
Heat still bothers me to no end. Even when I do nothing, even when I just sit there, the heat makes me short of breath and tired. This was the only thing that bothered me during our camping trip - it was supposed to be in the low 80’s but it was in the low 90’s instead. And even in the shade, and drinking water constantly, I felt lethargic and my chest felt heavy, as if my heart was working overtime.
I still obsess over my INR. Now, I measure it at home, and I panic when it’s something like 1.7 (my range is 1.5 to 2), because I know there is a margin of error of something up to 0.3 points. But so far, knock on wood, no bleeding nor clotting events, than Goodness! I have my cell phone alarm set permanently for 7 PM at night, to make sure I take my Coumadin the same time every day and not miss it. This will be set forever, I am sure.
I did want to ask: did your doctor tell you that there is a difference between Coumadin vs Warfarin? I am taking Coumadin now, but it might be significantly cheaper to take Warfarin. My cardiologist, though, believes that with Coumadin (brand) you see less of a inconsistency of what the numbers are from week to week. I can’t tell whether that’s true or not yet. My surgeon believes that’s not true, and that they both jump just as much depending on our bodies, what we eat and how we process foods, meds, etc.
I am still nervous about flying, and I think I’ll wait for up to a year before I venture out on a plane. This is just my own decision, I have not run this by any doctor. I just want to make sure I can rely fully on the new equipment I have in there. But every day, I gain a little more trust in it. I used to be nervous to be alone in the bathroom, taking a shower, with my husband just downstairs. But now, he goes to work before me, and I am alone in the house, as I get ready for work. I drive 30 minutes to my office and I am in one piece, thank Heavens, every day. I had to get used to feeling OK about being independent again in these past months, but it’s happening.
For those of you just starting these journeys, all the doubt, and the questions and the fear are very normal. There is no such thing as a dumb question, so ask here, ask your medical teams and probe them till they make you feel at ease. This is about your life, and they owe you all the answers you need to know. Learn as much as you can to set your minds at ease.
I found, for me, that knowledge has been power, and that helps me through the days when my body feels sorta shaky. Because I know some things, and because my doctors schooled me, I can trace why my body is feeling shaky some days - work, heat, non-sleep, eating or drinking the wrong things, stress all affect the way my heart feels. And as one of my PA’s said “you gotta respect the heart, man!”, so the way my heart feels is the way my whole body will feel. This journey teaches me that with every step.
For all of you, I am wishing you strength and belief that this is a “remedy-able” condition, for the majority of us, and although all the fear is normal, trust and believe in what you learn, that you can, too, go through this, all planets aligning. I believe that Barb has taught us all that what we need to focus on is the “next thing”. Keep that focus, and as such, at one point, we’ll look behind us, one day, deep, deep into the future, and see our whole lives.
Much health, confidence and strength to all of you. Smooth roads, and heart hugs to everyone.
August 21, 2016 - 6 months and 10 days since surgery. Second attempt at camping this past weekend, and unlike the first time, it felt great (so far) to be out there. And yes, the leaves are already changing.