On 2/20/2007, 17 years ago, I had my first open heart surgery due to an aortic aneurysm. It was called the Tyrone David procedure, a valve-sparing aortic... Read more
On 2/20/2007, 17 years ago, I had my first open heart surgery due to an aortic aneurysm. It was called the Tyrone David procedure, a valve-sparing aortic root replacement using a Dacron graft. I wonder if this procedure is still being used today! Most people who had an aortic aneurysm have it fixed at the same time as their heart valve replacement. I had my heart valve replaced 7.5 years later.
Although my decision was to spare my valve, I don't regret it because I was not a good candidate for a bio prosthetic valve at that time. The downside was that I knew eventually I will need a second open heart surgery to replace my heart valve. Luckily everything turned out fine and I'm doing quite well today!
It's hard to believe that it was 17 years ago when I learned about my BAV! I'm 72, still quite active and so far haven't had any complications due to the 2 heart surgeries! I'm so grateful!
For those of you who are facing heart surgery, know that there's hope. With great surgeons and technology that continues to progress, we see much more success rates and recovery! I wish you all the best! If I can do it β¦so can you! Be wellβ¦you got this !
Grace Mason Great success story Lilly. Happy heart anniversaryππ
Marie Myers Happy Anniversary Lilly! What a great post for National Heart Valve Disease Awareness Day!
Valerie Allen Very encouraging! Glad you are doing so well!
Rose Madura Wonderful to hear Lily. I had the dacron sleeve for my aneurysm repair along with my valve replaceme ... Read more
Rose Madura Wonderful to hear Lily. I had the dacron sleeve for my aneurysm repair along with my valve replacement so at least in 2017 they were still using them. I'm so encouraged with your post.
Hello Lionhearts! Every year I announce the anniversary of my heart valve...my Valversary! It's my way of paying it forward and to inspire you that life... Read more
Hello Lionhearts! Every year I announce the anniversary of my heart valve...my Valversary! It's my way of paying it forward and to inspire you that life can move on past heart valve replacement. I am a great example of that! 9 years ago today, I had my aortic heart valve replaced with an Edwards Lifesciences 23mm Magna Ease bovine valve! I'm still doing great and still grateful that I am doing so well! At my last Echo, which was in January 2023, my mean pressure gradient was 9cm. My cardiologist said this is well below 40cm, which is his guide to know it may be time for a new heart valve, or TAVR. He also said my heart valve could possibly take another 10-15 yrs to reach 40cm. I was certainly happy to hear that! On the other hand, I was also diagnosed with high blood pressure, 122/81, and high cholesterol, total 240. I have never had high BP or high cholesterol in my life. At 72 years old, I don't want to be reliant on drugs. I have not gained any weight! I'm working at finding ways to improve these numbers naturally and mindfully. In all fairness, the last several years were truly difficult. I attribute these numbers to anxiety, fear, and depression. My life has not come back to "normal" but I am working on it, and I will continue to live as fully as I can. To those of you who are facing surgery, I wish you the best outcome, and a quick recovery! It's not easy, but definitely easier than you think. If I can do it, so can you! Walking is the best recovery process....I promise! even now, I continue to walk. I walk for my health, and I'm reminded how lucky I am! I wish everyone a great holiday season! Take care of yourselves! You are #1! Thank you for taking the time to read my post! Good luck!Β Β Β
Rose Madura Lily, it is so good to hear from you! Congratulations on your 9th anniversary. Your report sounds ve ... Read more
Rose Madura Lily, it is so good to hear from you! Congratulations on your 9th anniversary. Your report sounds very encouraging. It's hard to keep cholesterol under control with diet but definitely worth the try. But what is your cholesterol ratio? You may want to look into that. My cholesterol is over 200 but my good cholesterol is so high that the ratio is in normal range. Anyway, best wishes to you and so happy to hear how good your valve is doing. π
Marie Myers Happy Anniversary! It isnβt uncommon for us to develop hypertension as we age. Our arteries get ol ... Read more
Marie Myers Happy Anniversary! It isnβt uncommon for us to develop hypertension as we age. Our arteries get older and stiffer as well as our joints. Managing your blood pressure and cholesterol can help keep your valve in good shape, and help it last longer. I hear you on the anxiety and depression issues. It has been a turbulent last few years, and we all react to that in different ways. I hope things settle down for you, and that you have many more healthy years!
Grace Mason Congratulations Lily! Awesome news, too, on another 10-15 estimated years on your valve π
Susan Lynn Lilly - Happy Anniversary! It sounds like you're doing great! I developed elevated blood pressure... Read more
Susan Lynn Lilly - Happy Anniversary! It sounds like you're doing great! I developed elevated blood pressure after surgery. I'm on a small dose of medication to bring it down, but yours is better than mine! I've had high cholesterol my entire life (as does my vegan twin sister) and I had completely clear arteries per my cardiac catheterization and cardiac scoring results. Some of the medications have more side effects than the conditions they're attempting to remedy. Ask a lot of questions. I strongly suggest reading the book, The Cholesterol Myth before taking any stains or other Rxs. Good luck.
Lilly Black Thank you, Rose, Marie, Grace and Susan! I appreciate your reply and encouragement. 'The Cholesterol... Read more
Lilly Black Thank you, Rose, Marie, Grace and Susan! I appreciate your reply and encouragement. 'The Cholesterol Myth' is super interesting. I heard about it a few weeks ago and listened to an entire podcast with Dr. Sinatra & Dr. Hoetz. It's put my mind at ease, but it's another rude awakening how pharmaceutical companies have taken over! I'm so glad I haven't taken statins! I understand how important it is to have medication available, but on the other hand, how do you know how the medication will affect you?
My dad lives in Montreal, he's 98 and his doc prescribed statins! why on earth?? It's a cop out, if you ask me!
I'm going to continue with a healthy diet, walking and trying to get enough sleep! Thanks again for your replies....I greatly appreciate it!
I have some good news to share! On Thursday, 1/18/2023, I met my new Cardiologist, Dr. Joe Aragon. He is affiliated with Cottage Hospital in Santa Barbara... Read more
I have some good news to share! On Thursday, 1/18/2023, I met my new Cardiologist, Dr. Joe Aragon. He is affiliated with Cottage Hospital in Santa Barbara, CA. It was time for my annual Echo, and to use my new Medicare Advantage Plan. I was quite impressed with the Cardiology Clinic and Dr. Aragon's level of expertise. After the EKG and the Echo were completed, I met with him to discuss the results. After 8 years of living with my Edwards Lifesciences 23mm Magna Ease valve, he confirmed that I am doing great! My heart and my heart rhythm is normal. My bio-prosthetic aortic valve currently has a mean gradient of 9, which he explained this could mean I have many more years of life remaining on this valve! I was thrilled! He said that the magic number is 40, and that is when they start watching closely to determine when the heart valve needs to be replaced. In addition, he mentioned that he recently worked on someone who required a TAVR. He installed a TAVR within the bio-prosthetic valve, and it went really well. This procedure, I believe, is also called valve-in-valve. He said we won't know until the time comes, but he was quite sure this could be done with my valve as well. I was happy to hear that, but the words "we won't know until the times comes" was not reassuring for me. But we shall see....I was never a good candidate for a TAVR. I told him that my heart surgeon (Dr. Sharo Raissi), who installed the heart valve in 2014, performed a Manougian technique, which means he enlarged my aortic root to fit the 23mm Magna Ease heart valve in preparation for a future TAVR to be placed within my current heart valve. Dr. Aragon was very pleased to know that because there is a greater chance that the TAVR will work...when the time comes. In the meantime, I wish everyone success with their heart valve replacements! It's a scary time, but well worth it, as you can see by my own experience. There were many anxious moments, and multiple panic attacks throughout the years, in addition to migraines, digestive issues, and tinnitus. But for the most part, I can honestly say, at 71 years old I am doing very well. I am so grateful!! Take care of yourself....you are # 1!Β Β Β
Klara ΔiΔiΔ Dear Lilly I am very glad everything is still fine and it sounds like that will stay the case for qui ... Read more
Klara ΔiΔiΔ Dear Lilly I am very glad everything is still fine and it sounds like that will stay the case for quite some time in the future ... I hope you stay well!
Rose Madura Hi Lily, it's always good to hear from you. Your news on the valve is fantastic! Wonderful to hear.... Read more
Rose Madura Hi Lily, it's always good to hear from you. Your news on the valve is fantastic! Wonderful to hear. It gives all of us hope that our valves will last a long time.
It's Dec 10, 2022, and 8 years ago today, my aortic heart valve was replaced by an Edward Sciences Magna Ease 23MM ...Read more
8 year valveversary!
It's Dec 10, 2022, and 8 years ago today, my aortic heart valve was replaced by an Edward Sciences Magna Ease 23MM bovine valve. I have never felt better after recovering from the surgery!
I have never had a good heart valve, and I didn't know about my BAV until I reached 55 years old. It was then I began to feel badly. I was out of breath, I was gaining weight because I was breathless when walking, I didn't know what was happening to me. I had chest pain, terrible chest pain. I saw my GP and she ordered an EKG. An abnormality was found! She ordered an Echocardiogram. Long story short, they found an aneurysm but mis-diagnosed me with a hole in my heart. I needed more testing.
I decided to get a 2nd opinion, which I did at Stanford Medical. They diagnosed me with BAV and a 4.8mm aortic aneurysm. They gave me 6 months to think about fixing the aneurysm. I said no... let's do it now...I didn't want to take any risks.
My first surgery was on 2/7/2007. My entire ascending aorta was replaced with Dacron which basically fixed the aneurysm. I felt better after the surgery, and I was told by Stanford I could live like this for another 10-15 years. But, no! that didn't work.
7 years later, I was doing very badly. My aortic heart valve was failing! just walking a few feet gave me chest pain. My chest hurt so badly! I needed a heart valve replacement, but not with Stanford Medical, because they wanted to give me a mechanical replacement valve. I decided to find an alternative.
On 12/10/2014, Dr. Sharo Raissi of St. John's Hospital in Santa Monica, replaced my aortic heart valve with an Edward Sciences Magna Ease 23MM bovine valve. He did a beautiful job! he also watched over me for 3 months post-op via FaceTime and text messages after the surgery. He was wonderful! I never had an issue! I recovered very well, and to this day, I have had no problems at all. I'm so lucky! I feel very very grateful for my extended life. I am still here alive and well!
Nothing stops me from doing anything I want to do. Except for Covid! I'm so isolated but I've been walking, and sometimes I walk on Pismo Beach, CA.
Ocean Walks During COVID
by Lilly Black
In the blue where the ocean meets the sky
Calm tranquil thoughts, Iβm finally at peace!
Embraced by the warmth of the sun and ocean breeze
The smell of the ocean, my toes in the water
Melts my sad heart!
My sadness is momentary and I allow it to take over me when I feel it. But on the other hand, I am still so grateful that I am well. I can still live a pretty decent life!
For those of you who are waiting for or recently had heart valve replacement, I know you will feel so much better once you have recovered! You may feel scared or worried... I did, but just know you will be OK, and maybe even better than ever. Many of us had the same surgery, and for most of us, we are fine.
My wish for you is that you have an excellent experience! Listen to your doctor, walk as much as you can....keep walking as much as you can! I still walk because walking saved my life.
Take time for you...listen to your body, and know that all we have is now!
Take care of yourself. You are #1! ππ₯°
Klara ΔiΔiΔ Dear Lilly thank you for this wonderful post and congratulations! I love the term "valveversary" :))) ... Read more
Klara ΔiΔiΔ Dear Lilly thank you for this wonderful post and congratulations! I love the term "valveversary" :)))
Lilly Black Klara, thank you! I've seen the 'valveversary' term before on this site, I didn't invent it...but ma... Read more
Lilly Black Klara, thank you! I've seen the 'valveversary' term before on this site, I didn't invent it...but maybe I spelled it differently.
Marie Myers Happy Anniversary Lilly! Wishing you many more Healthy Years!!
Angela Meletiadis Lilly, thank you for this uplifting post! Your encouragement is one of the reasons why I get on this ... Read more
Angela Meletiadis Lilly, thank you for this uplifting post! Your encouragement is one of the reasons why I get on this site nearly every day! May God bless you and give you a meaningful, joyous Christmas
Lilly Black Thank you, All!Β I'm so glad to hear from you, Susan, Ana, Patsy, Pamela and Angela.Β Patsy, thank ... Read more
Lilly Black Thank you, All! I'm so glad to hear from you, Susan, Ana, Patsy, Pamela and Angela. Patsy, thank you for enjoying my poem Angela, I agree, this site is definitely helpful to receive encouragement! That's why I'm here too, although I don't come on too often anymore. The members of this site can relate! So so helpful! I wish you all safe and happy holidays! Take care! β€οΈ
Greg Lewis Great post, Lilly! Thankyou for writing, and sharing it with us! One of the learnings I will always h ... Read more
Greg Lewis Great post, Lilly! Thankyou for writing, and sharing it with us! One of the learnings I will always have from this absolutely crazy ride, that began with a phone call from my cardiologist in April 2021, is exactly as you say " all we have is now" very nicely said, Lilly!
Susan Eckermann Happy Valversary, Lily! What a wonderful post! We all need these reminders. I'm so happy you pursue... Read more
Susan Eckermann Happy Valversary, Lily! What a wonderful post! We all need these reminders. I'm so happy you pursued additional options and found a surgeon and procedure that worked for you. Best wishes for continued good health and happiness
Lilly Black Greg and Susan, thank you! Definitely a crazy ride! Iβm amazed at how much we can endure. Best wish ... Read more
Lilly Black Greg and Susan, thank you! Definitely a crazy ride! Iβm amazed at how much we can endure. Best wishes to you too!
Hi, Heart Warriors. A shout out to all of you who are waiting for surgery or just had surgery. Wishing you a great experience and quick recovery! I had my... Read more
Hi, Heart Warriors. A shout out to all of you who are waiting for surgery or just had surgery. Wishing you a great experience and quick recovery! I had my first surgery in 2007 to fix my aneurysm, and my second one in 2014 to receive a heart valve replacement. BUT, there was no Covid then, and all the rest of the craziness that is occurring today. I can't imagine going through heart surgery amidst this craziness. My only advice or guidance is focus on you! turn off the TV and put away your phone if you are feeling stressed. Listen to some good music and meditate. Get enough sleep. Think of the good things in life and envision yourself fully recovered. I cannot stress enough how this has helped me. Walk, walk, walk....seriously! don't let anything stop you from walking. This was my saving grace! after my first surgery I swam 5 days a week. After my second surgery, I walked daily! you can walk in your house, around your house or around the block. Sooner than you think you'll be walking miles. It truly speeds up recovery....I promise! Take care of you, you are # 1! good luck!
Rose Madura Hi Lily, good to hear from you and your great advice .
Howard Powders I agree about the walking. Did it daily for years before mitral valve repair and I resumed daily walk ... Read more
Howard Powders I agree about the walking. Did it daily for years before mitral valve repair and I resumed daily walking as soon as the next day after I got home from the hospital.
Pamela Gregory Thank you for the uplifting message. Feeling very nervous everyday with surgery a month away. Nice t... Read more
Pamela Gregory Thank you for the uplifting message. Feeling very nervous everyday with surgery a month away. Nice to have suggestions from heart warriors who have already successfully lived through it.
Klara ΔiΔiΔ Thank you very much, agree with Pamela :)
Lilly Black Rose, glad to hear from you too! I don't come here often but I still feel the need to keep in touch. ... Read more
Lilly Black Rose, glad to hear from you too! I don't come here often but I still feel the need to keep in touch. And when the inevitable time comes, and who knows when that will be, I will be back! The life of an Edwards Life Sciences Magna Ease Bovine valve is approx. 18-20 years. But that can go either way. My Cardiologist, Dr. David Liang at Stanford, when he saw my echo last year said it could most likely last 25 years! there was no calcium deposit seen on the echo. That is key! so we'll see. How are you doing??
Lilly Black Howard, that's great! I read your journal and it appears you are about 2.5 months out from surgery, r ... Read more
Lilly Black Howard, that's great! I read your journal and it appears you are about 2.5 months out from surgery, right? wow....brings back memories! glad you are walking! take care and keep up with the great recovery!
Lilly Black Pamela, I hear you! I still remember the nerves, so I hired a surgery coach who also had heart surger ... Read more
Lilly Black Pamela, I hear you! I still remember the nerves, so I hired a surgery coach who also had heart surgery. To say the least, it is a journey! a difficult one but you will feel so much better after the surgery, I guarantee! before my heart valve replacement, I was stenotic like you. I could hardly walk one block....chest pain and breathlessness was quite severe! but....after my heart valve replacement, I feel 100% better. I never had a good valve so to get this one which was 23mm I couldn't even believe after the first day of surgery, I was already feeling better! I read your story and regarding the pain, interestingly enough, the most pain you will feel is on the sternum. When I had my heart valve replacement, this was my second surgery which means it was the second time they cut into my sternum. This is the part that took longest to heal. However, my energy level was up, I could breathe, I could walk, and I could talk again almost immediately! In terms of the sternum, it took awhile to heal. I couldn't lift anything, or bring my arms up over my head for about 6 weeks. Bottom-line, it's worth it....you will feel so much better!! I'm 71 this month, and I don't feel a day over 50....seriously! I wish you good luck and the best outcome! you came to the right place for guidance.
Lilly Black Hi, Klara. You're welcome! it definitely helps when you hear from people who lived successfully bey... Read more
Lilly Black Hi, Klara. You're welcome! it definitely helps when you hear from people who lived successfully beyond heart surgery. I always gave a sigh of relief when I heard from people who were 5 and more years past their surgery! by the way, my ethnicity is part Baltic, but born in Quebec, Canada. We spoke Slavic, French and English at home. I live in the U.S. now. I wish you all the best with your heart surgery! Sretno!
Terry Tannenbaum Thanks Lilly (my mother's name) very reassuring as I approach my second valve repair. I greatly appre ... Read more
Terry Tannenbaum Thanks Lilly (my mother's name) very reassuring as I approach my second valve repair. I greatly appreciate your insights!
Rose Madura Lilly, I'm doing great. It's wonderful what your doctor said after the echo. I'm having an echo in J ... Read more
Rose Madura Lilly, I'm doing great. It's wonderful what your doctor said after the echo. I'm having an echo in July 2023 and hope I get a similar report! Take care.
Howard Powders Yes, Lilly. Tomorrow is 10 weeks. Glad you are fine!!π
In 2007, my aortic aneurysm was fixed with a full sternotomy using Dacron. Then in 2014, I had a heart valve replacement with a Bovine heart valve during a ...Read more
In 2007, my aortic aneurysm was fixed with a full sternotomy using Dacron. Then in 2014, I had a heart valve replacement with a Bovine heart valve during a full sternotomy. I'm doing well, but I'm concerned about Covid and have been since the pandemic began. I consider myself high risk due to these 2 heart surgeries. But is my concern valid? I know we are at risk for endocarditis if we develop an infection. In addition, doctors are finding that Covid causes heart problems!
I have been isolating with my husband. We basically don't go anywhere except on our patio or local car rides by ourselves. We order everything online and have it delivered. (Dan has diabetes and asthma and is overweight).
1. Can anyone else relate?
2. Does anyone have any good information to share with the community in terms of how much at risk we are with our prosthetic heart valve?
3. Or is it a case by case basis? meaning, some of us are more high risk than others based on our health status.
It's difficult to find good information, but I'm also learning that a lot is still unknown and we are learning as we go along. Not only that, getting Covid is a crapshoot....some get it, some don't... even when being fully vaccinated (we are vaccinated and boosted!) By the way, Dan's 3 kids who are in their 40s, are fully vaccinated but all of them got Covid and long Covid!
I would love to hear your thoughts or experiences! Thank you! Stay safe!
Lilly
Marie Myers I asked my cardiologist the same question; am I at greater risk due to the artificial valve? He assur ... Read more
Marie Myers I asked my cardiologist the same question; am I at greater risk due to the artificial valve? He assured me that I was at average risk due to my active lifestyle and general good health. That said, my hubby and I have still not been going out full tilt. If we go to restaurants, we go at βoff timesβ to avoid crowds. I still cook most meals. I do wear a mask when food shopping and when visiting my 105 yo mother-in-law at the assisted living. I think it really is an individual thing as far as risk goes. We really are still learning as we go along with this pandemic! Hope we are in the downside of this experience...
Rose Madura I agree that it's an individual thing. My thought is that since it is new to us, and we know it can ... Read more
Rose Madura I agree that it's an individual thing. My thought is that since it is new to us, and we know it can be deadly, I don't want to get it. The flu can also be deadly and I don't want to get it either. That being said, I'm probably not as cautious with wearing masks as others but have no problem wearing one if it makes someone feel safer. I think it's interesting that flu cases have been down two years straight and I think it's a result of everyone being vigilant at hand washing and distancing when you can. We will go out to eat but I've found I prefer home cooked meals better anyway since you can control salt and other ingredients. I'd certainly listen to MY doctor rather than any politician. Part of the problem is the changing of the rules as we go. I know it's a new virus but mandating things is not the answer, in my opinion. People are smart and should work with their doctors as to what is best for them.
Rita Savelis Hi Lilly. It's nice to hear from you and I'm sorry to hear that due to Covid you have to isolate. I h ... Read more
Rita Savelis Hi Lilly. It's nice to hear from you and I'm sorry to hear that due to Covid you have to isolate. I had double valve replacement 7 years ago, I've had 3 Pfizer shots. I also had 2 (separate) cancers in 2020 during Covid (before vaccines) with ensuing radiation, chemo, surgery. Not one of the many doctors I was seeing (cardiologist, surgeon, oncologist...) told me that I needed to isolate. They did recommend getting vaccinations when I could, which I did. But I shopped and took public transportation, etc. I think each person has their own personal relationship to health and to their personal health, so you must do what feels right for you. I don't think there is one right way to proceed though. But I am glad that you are vaccinated. I haven't had covid but my son who lives with us had asymptomatic covid twice.
Civita Fahey Hello Lilly, nice to hear from you. I like Marie asked my cardiologist and got the same answer. We ... Read more
Civita Fahey Hello Lilly, nice to hear from you. I like Marie asked my cardiologist and got the same answer. We are not at any more risk due to the heart valve. I actually got Covid last year and basically had a head cold but was exhausted for a couple of weeks. Otherwise fine. At the time I had had one vaccine. I now have had two and booster. We here in my part of Massachusetts have no mask mandates, Boston still does. I've been in stadiums indoors and have not gotten anything. I think we all need to decide what is our personal threshold of either living with it or just keeping ourselves isolated. Hopefully, it will be declared an endemic state soon as Omicron has pretty much taken over and is in most cases less severe. Like Rose, I feel we have had see saw information, "dont wear a mask, wear a mask, wear two, but three is better. "Please.. If one feels they are at high risk, then by all means wear a mask, and a correct fitting one at that as most masks really don't do much as they are open or moved constantly. In truth, I think the mental issues the "isolating" has caused is much more deadly than Covid to most. best to you.
Lilly Black Thank you, Everyone. Good to hear from you! I appreciate that you took the time to reply. It helps t... Read more
Lilly Black Thank you, Everyone. Good to hear from you! I appreciate that you took the time to reply. It helps to know how others feel and to learn about their experiences. I agree it is an individual thing ....at this stage.
Although no fault of ours, it was critical to do our part to get this pandemic under control and not forget the elderly. Wearing a mask stops the spread, protects others around you, and studies show it protects you (if it fits correctly!).
When I visited my cardiologist, Dr. David Liang @ Stanford Medical, he wore a mask and was fully vaccinated, as I was. He asked me if he can get a hug ... we hadn't seen each other in years. It is a crapshoot though, because some of us older people get Covid, and some just don't....but I'm not willing to take any chances at 70 years old.
Take care! and Thanks again! I too hope we are on the downside of this experience.....
Happy Holidays, Everyone!
Today is my 7th year anniversary of my aortic heart valve replacement. On Dec 10, 2014, my natural heart valve was replaced with ...Read more
Happy Holidays, Everyone!
Today is my 7th year anniversary of my aortic heart valve replacement. On Dec 10, 2014, my natural heart valve was replaced with an Edward Lifesciences Magna Ease 23mm aortic heart valve. Previous to this replacement, in February of 2007, Stanford Medical fixed my 4.6cm ascending aortic aneurysm with a Dacron graft. At that time, my bicuspid aortic valve was working fine and didn't require to be replaced during the surgery.
Today, at 70 years old, I am doing really well! No aneurysm, no chest pain and my prosthetic heart valve is doing great! I've been quite active. I walk several miles a week, and I don't let anything stop me from doing what I want to do...except for Covid.
On April 23, 2021, I visited Dr. Liang of Stanford Medical, and he personally performed an echocardiogram. He confirmed my heart and prosthetic valve are doing really well and was really pleased with the echo. Needless to say, I was thrilled to hear it!
Migraines have subsided, tinnitus has not subsided but I have learned to live with it. I typically eat a Mediterranean diet, mostly plant based, but I keep everything in moderation, including alcohol. I lost 40 lbs, and would like to lose another 15 pounds in 2022. I've learned to live with IBS, as well. Small meals and Fodmap has helped me a lot, but mostly constipation has been the culprit as I age. Fiber, exercise, and Aloe Vera has greatly helped! As long as I keep a close watch on my gut, I feel pretty good!
My advice to you is to listen to your body, exercise, eat well and have some fun! Covid has placed a huge damper on my life, but I learned that depression is harmful to my body. I couldn't sleep... I was an insomniac! I was so scared of Covid. No matter what the circumstance, we need to find a way to enjoy our life! we need to find ways to enjoy each other safely! It's been a struggle and there are days that I still struggle due to Covid.
Take care of yourselves...you are #1! Most of all, learn to relax, take time to meditate...it does wonders for your mind and body. Enjoy the holidays safely!
Adam Pick Love, love, love all of this goodness!!! Go Lilly! Go!!!!! Happy 7th Anniversary!!!
Lilly Black Adam, thank you so much! great to see your comments :) enjoy the holidays, and thank you for all that ... Read more
Lilly Black Adam, thank you so much! great to see your comments :) enjoy the holidays, and thank you for all that you do to keep us educated and well informed regarding our hearts! β€ stay safe...please!
Jim Archer It is good to hear that you have been seven years. I had an Edwards Inspiris Resilia aorta valve in A ... Read more
Jim Archer It is good to hear that you have been seven years. I had an Edwards Inspiris Resilia aorta valve in April of 2020. This valve is good for 10 to 12 years. How do you not count down the years? You advice is sound. We are moving to a Mediterranean diet also, I need to take your advice about meditation.
Rose Madura Great post Lilly! Glad you are doing so well. Stay strong!
Congratulations Lilly, great post and Happy Birthday and Anniversary. God bless you
Ginny Turner Lilly, your post is so inspiring. Your road hasn't been easy, but you remain strong, positive and hop ... Read more
Ginny Turner Lilly, your post is so inspiring. Your road hasn't been easy, but you remain strong, positive and hopeful. Congratulations on your 7-year anniversary, and welcome to the 70s club! From my experience, it's a great place to be. Happy Holidays and best wishes!
Marie Myers Great to hear your report! Wishing you many more Happy, Healthy Anniversaries!!
Rita Savelis So nice to hear your good news Lilly!
Lilly Black Thank you so much, everyone, who have posted! I appreciate your kind words. I was happy to see the na ... Read more
Lilly Black Thank you so much, everyone, who have posted! I appreciate your kind words. I was happy to see the names of people who have been posting for years as well! I wish you all a wonderful holiday season. Keep healthy and stay safe...please! β₯βΊ
Louise Moore You are an inspiration, Lilly! and Congrats on this 7th year anniversary ππΌ
Civita Fahey Happy Anniversary Lilly. We have the exact same valve! Good to hear its still going strong at 7 year ... Read more
Civita Fahey Happy Anniversary Lilly. We have the exact same valve! Good to hear its still going strong at 7 years, (I'm at 4 3/4 right now). I wish you many many more.
Civita Fahey Happy Anniversary Lilly. We have the exact same valve! Good to hear its still going strong at 7 year ... Read more
Civita Fahey Happy Anniversary Lilly. We have the exact same valve! Good to hear its still going strong at 7 years, (I'm at 4 3/4 right now). I wish you many many more.
Lilly Black Civita, thank you! good to know. When I was visiting with Dr. Liang (Stanford and Hoag hospitals) he ... Read more
Lilly Black Civita, thank you! good to know. When I was visiting with Dr. Liang (Stanford and Hoag hospitals) he said I was doing so well that he can see this valve lasting about 25 years! so we'll see. Good luck with your valve! glad you got this one too :)
Lilly Black Jim, that's right...how can we not count down! Each year, for me, is a milestone. I surpassed my gran ... Read more
Lilly Black Jim, that's right...how can we not count down! Each year, for me, is a milestone. I surpassed my grandmother's and aunt's ages so I feel pretty lucky at this point. Good luck!
Tomorrow my husband and I are getting a Pfizer vaccine! Driving to Cottage in Goleta to get it, excited and nervous at the same time. Excited to be moving in ...Read more
Tomorrow my husband and I are getting a Pfizer vaccine! Driving to Cottage in Goleta to get it, excited and nervous at the same time. Excited to be moving in a positive direction but nervous because weβre guinea pigs. Weβve been in isolation for so long! Itβs time to move forward. Usually Iβm concerned about my heart valve but at this point, I want that vaccine in my arm to protect us. Iβm 69 and Dan is 73.....Iβll let you know how it goes. π keep safe!!
Blessings Lilly, some of us have gotten the vaccine and Iβm going next week for my second Moderna s ... Read more
Blessings Lilly, some of us have gotten the vaccine and Iβm going next week for my second Moderna shot if it still available. Iβm 14 mos. post op. Be well and God bless you both
Lilly Black Thank you, Ana! I hope you get to receive your second shot! Please keep me posted. Supposedly the sec ... Read more
Lilly Black Thank you, Ana! I hope you get to receive your second shot! Please keep me posted. Supposedly the second one has more side effects. How are you feeling?
Lilly Black We received our first Pfizer vaccine yesterday! Cottage hospital definitely has their act together. I ... Read more
Lilly Black We received our first Pfizer vaccine yesterday! Cottage hospital definitely has their act together. It was very well organized and very safe. My upper arm is a bit painful and that is all the side effects I feel. Iβm happy π we will get our second round in about 3 weeks. I will keep you posted!
Hi Everyone. I'm alerting you, you don't want shingles! I hope you never get it....I highly recommend the shingles vaccine so you don't. I will get it done ...Read more
Hi Everyone. I'm alerting you, you don't want shingles! I hope you never get it....I highly recommend the shingles vaccine so you don't. I will get it done as soon as I can! 2 weeks ago I came down with shingles on my head, my forehead and my left eye! it was horrible! but after reading other people's stories who got shingles in the same area, I can see that I was really, really lucky. I could have lost my eye sight. With the correct medication and eye drops, I am healed! I'm still super sensitive on my head, and forehead, but my eye has healed and the shingles rash is gone. The appearance of my eye was like conjunctivitis which is what I thought I had, but I was suspicious about it because of the itchy rash I got on my head and forehead. After 2 weeks of Doxycycline Hyclate hyclate 100 mg oral capsule for the sinusitis, ofloxacin ophthalmic 0.3% ophthalmic solution for my eye, and Valtrex for the shingles, Advil for pain, I am doing much better. It was hell though......the pain was unbearable, which also brought on migraines. I am resting this weekend, I have no more meds (thank goodness) and I'm feeling so much better. This is my first bout of shingles, and I hope my last..... :( My heart is doing great! no complaints there! :)
Keep well, and keep safe! Take care.
Elaine Foster So sorry to hear you have battled shingles! I had the shingrex vaccine shots about a year ago. I ha ... Read more
Elaine Foster So sorry to hear you have battled shingles! I had the shingrex vaccine shots about a year ago. I had been hearing of so many in our age group getting shingles, that I didn't want anything to do with them!! My cousin had them just like you did, on face and eye area. She caught it quick and her eye is fine too. Take care of yourself and best wishes for a better year ahead!
Hi Lilly, sorry to hear about your bout with shingles and how painful it was. So glad youβre over i ... Read more
Hi Lilly, sorry to hear about your bout with shingles and how painful it was. So glad youβre over it and feeling better, mostly that your heart is doing well. I have gotten the shingrex vaccine at the advice of my primary a couple of years ago. Glad you are on the mends. Be well and God bless you
Lilly Black Thank you Elaine and Ana. You did the right thing for yourselves. I had so many plans like get an ech ... Read more
Lilly Black Thank you Elaine and Ana. You did the right thing for yourselves. I had so many plans like get an echo and get a shingles vaccine but then Covid happened! Iβve literally been isolated for a year now with my husband. Everything is more difficult especially when it means putting yourself and others at risk. But there is light at the end of this long tunnel and thatβs what I will focus on to get through this crazy time. Thank you so much for your kind support.... I appreciate it!πβοΈ
Marie Myers Glad you are on the mend! Shingles is not a fun experience, for sure..
Rose Madura So sorry to hear this but glad you are feeling better. My brother who is only 51 got shingles in th ... Read more
Rose Madura So sorry to hear this but glad you are feeling better. My brother who is only 51 got shingles in the same place as you and had a really rough time as well.
Rob Sparling Wow. Thanks for the heads up! Something weβll all want to avoid! Sorry it ran you over but glad y ... Read more
Rob Sparling Wow. Thanks for the heads up! Something weβll all want to avoid! Sorry it ran you over but glad you muscled through!
Lilly Black Marie, thank you. No it's no fun at all, and today I'm not feeling well again, so just resting up!
R ... Read more
Lilly Black Marie, thank you. No it's no fun at all, and today I'm not feeling well again, so just resting up!
Rose, sorry to hear about your brother! I saw a video today of a young 32 yr old woman who had a 2 week old baby, and she developed Shingles in the same area as well....crazy! she described it perfectly and exactly as my experience. I thought I had meningitis because the pain in my neck and head was excruciating.
Rob, yes, definitely want to avoid! thank you all for reaching out to support me. Today is not a great day, but I will be patient and think about the silver lining ahead! Take care and thank you!!
Wanda Mroz Oh my gosh, Iβm so sorry that happened to you. Thankfully I have had the shingles vaccine, both th ... Read more
Wanda Mroz Oh my gosh, Iβm so sorry that happened to you. Thankfully I have had the shingles vaccine, both the older one and the most recent updated one. I have a friend that also had a bad case near her eye. So happy to hear you are healed and well.
Shannon Gray I am so sorry! You certainly donβt need one more thing to deal with. Prayers youβre up to full sp ... Read more
Shannon Gray I am so sorry! You certainly donβt need one more thing to deal with. Prayers youβre up to full speed very soon.
Lilly Black Thank you Wanda and Shannon. Each day turns out to be a better one! Taking one day at a time to heal. ... Read more
Lilly Black Thank you Wanda and Shannon. Each day turns out to be a better one! Taking one day at a time to heal.... honestly didnβt realize how stressed out I was...it could have been worse. π
Wanda Mroz So glad to hear you are improving everyday.
Greetings Heart Warriors! Today is my 6th year anniversary for aortic valve replacement. Please click on my Journal and my story to read about me. I feel pretty ...Read more
Greetings Heart Warriors! Today is my 6th year anniversary for aortic valve replacement. Please click on my Journal and my story to read about me. I feel pretty good for 69 years old! I walk for 2 miles every other day, and I lost 35lbs.
I still work full time at a very stressful job training clients how to use our software system. I am staying safe due to COVID and I wear a mask everywhere, and anywhere....but mostly because I live in California, I am quite isolated in my home with my husband, who is 73.
My recommendation to you is keep walking, take care of yourself, listen to your body, and learn to relax. I was plagued with anxiety and panic attacks for several years because I was so scared of dissection or dying. But through meditation, learning to relax, CBD, and a healthy diet, I no longer have panic attacks. My anxiety, migraines and tinnitus have dissipated substantially. I take care of myself, because I want to be around for my family and it is important for me that my family is proud of me. Please take care of yourself because you are #1 !!!!!
Lilly Black Marie, thank you. Good to see you on the site! I haven't been on for awhile. How are you doing?
Elaine Foster Hello heart sister!!!! I haven't been on HVS site for awhile, but today being "our anniversary" was ... Read more
Elaine Foster Hello heart sister!!!! I haven't been on HVS site for awhile, but today being "our anniversary" was thinking of getting on, and there was your posting. So glad things are going well for you and that you have found ways to manage the speed bumps in your life. I am doing well also. Hard to believe its been 6 years, and yet it also seems like a long ago memory. Continue the good path you are on. Thanks for posting.
Marie Myers Hey Lilly- Glad to say I have been doing well. I am at almost 4 years, and feel like I am back to nor ... Read more
Marie Myers Hey Lilly- Glad to say I have been doing well. I am at almost 4 years, and feel like I am back to normal. I get a few days every now and then , worrying about the βwhat ifsβ, but I can usually get my mind back to reality. Like you, I continue to walk and bike several days per week, and I frequently do yoga and meditation. All of it helps tremendously! I am 80% retired, just working 1 day a week. Work is a hard habit to give up after 40+ years. Glad to hear you are doing well. I remember reading your journals in the time leading up to my surgery. It was all so helpful, so I thank you very much!
Rose Madura Congratulations Lilly! I'm glad you are doing well. I also followed your journey since I got on the ... Read more
Rose Madura Congratulations Lilly! I'm glad you are doing well. I also followed your journey since I got on the site in 2017.
Lilly Black Elaine, Marie and Rose, absolutely I remember all of you! I appreciate your replies very much. Iβm ... Read more
Lilly Black Elaine, Marie and Rose, absolutely I remember all of you! I appreciate your replies very much. Iβm so glad you are doing well. It was a scary but incredible journey, we have learned so much. Elaine, I thought of you too today and Iβm glad you reached out. Marie, I will be about 75% retired at the end of next February and I cannot wait! Itβs been a challenging year to say the least! Continue to take care of yourselves and thank you for the lovely notes πβοΈ I wish you great health for the New Year! Keep well and stay safe.
Rita Savelis Happy 6 years Lilly! So happy to get good news from you.
Shannon Gray Happy 6th Anniversary, Lily! It is wonderful to see your post. You were the first to reach out to me ... Read more
Shannon Gray Happy 6th Anniversary, Lily! It is wonderful to see your post. You were the first to reach out to me following my surgery and I am forever grateful for your supportive ways. Sending my best!
Civita Fahey Congratulations Lily.. Always nice to hear from you.. So glad you are doing well. Congrats on the wei ... Read more
Civita Fahey Congratulations Lily.. Always nice to hear from you.. So glad you are doing well. Congrats on the weight loss.! Stay safe and healthy.
Lilly Black Hi, Rita, Shannon and Civita! nice to hear from you too! How are you doing? it's been crazy, needle ... Read more
Lilly Black Hi, Rita, Shannon and Civita! nice to hear from you too! How are you doing? it's been crazy, needless to say but hope you are staying healthy! Sending you all my best too!
Cheryl Batzing Lilly and Elaine, I'm right there with you two heart sisters rolling up on our 6th year post OHS! So ... Read more
Cheryl Batzing Lilly and Elaine, I'm right there with you two heart sisters rolling up on our 6th year post OHS! So thankful I feel well today, and also thankful for you two who walked this journey with me! Let's figure out how to connect moving forward and Lilly, I'll post soon the pic of you and me with our Heart Valve Surgery.com friends we met in person at the Edwards Life Science convention in CA a "few" years ago! Love this site and the friends we meet along the way! My 6th OHS anniversary comes up up next week!
Adam Pick Congratulations Lilly!!!! Loved reading this post. Thanks for sharing with us!!!
Lilly Black Shannon, thank you! sending my best your way too! :) Cheryl and Adam, thank you for your posts! it wa ... Read more
Lilly Black Shannon, thank you! sending my best your way too! :) Cheryl and Adam, thank you for your posts! it was great meeting both of you at Edward Sciences. That was such a great opportunity for all of us. I will always remember it! I'm happy to know you are both well! Adam, although I don't frequent your site as much, thank you so much for the site! you have helped so many!
Elaine Foster Cheryl Batzing, so good to see you checking in also. Love hearing you are doing well!!
I live in California, USA. I'm trying to make a decision! I'm still working full time and enrolled with my Employer's Cigna PPO plan. I have been receiving ...Read more
I live in California, USA. I'm trying to make a decision! I'm still working full time and enrolled with my Employer's Cigna PPO plan. I have been receiving my SS benefits, working full time, but plan to work only 2 days a week when I reach 69 yrs of age in Sept, which means my employer will not provide health care coverage. Here's the question:
Is there anyone out there who is enrolled in Medicare today but not enrolled in any Medicare Supplemental or Medicare Advantage plus? I'm asking because if I choose a Supplemental plan, that's $600.00 out of pocket for me any my husband. It would great not have deal with a Supplemental Plan. Cost of Medicare only is $288.00 for both of us. With the Supplemental, it increases the cost to $600.00 approx. So.....has anyone out there been able to receive heart care with only Medicare Part B (no Supplemental) and lives in CA? I don't have any other health issues that require regular doctor visits either. Thank you! :)
Civita Fahey Hi Lilly, hope all is well with you. .I work in the healthcare field and deal with insurances a lot. ... Read more
Civita Fahey Hi Lilly, hope all is well with you. .I work in the healthcare field and deal with insurances a lot. I would look into a Medicare Advantage Plan. its more like an HMO but paid through Medicare benefits. We have several here in Mass ( BC is one of them) and I'm sure that they have some in California. Actually I recommended this to my accountant who now lives in CA. it works basically like an HMO plan and you pay a copay for visits, and you need to choose a physician group etc. There normally is no need for a supplemental plan, though if you are on a lot of medications there is some gap. My parents are on it an they take a fair amount of meds, and they still don't pay much out of pocket, much much less than 600 a month, or nothing at all. There is a lot of info on them on line and your primary care office might be able to help. Hope this helps you out. Best to you Civita
Marie Myers The down side of not having the supplement would be having to pay the 20% Of medical expenses that M ... Read more
Marie Myers The down side of not having the supplement would be having to pay the 20% Of medical expenses that Medicare does not cover. That could run up to a lot of $ if you have a major illness , hospitalization, or surgery. It is a tough call, but we went with the supplement for both me and my hubby. And yes, it is $550 per month for both of us. If you go with the Medicare Advantage Plan, you would not need the supplement, but you might be more limited on which doctors you can see in that plan. Good luck in making that decision!
Lilly Black Civita and Marie, I appreciate your information, which I will read thoroughly tonight. Thank you!
Deena Elani Also- check out any medications you currently need and see the diff in out of pocket.
Civita Fahey Right Marie, there are some limitations on the doctors that you can see, but, about 95% of practices ... Read more
Civita Fahey Right Marie, there are some limitations on the doctors that you can see, but, about 95% of practices take the MAP, at least here in Mass. Its actually one of the biggest payors in the my organization.
Lilly Black Civita, that's interesting! when you say biggest payers are you saying MAP is most commonly used by c ... Read more
Lilly Black Civita, that's interesting! when you say biggest payers are you saying MAP is most commonly used by consumers? sorry for all the questions, but we really got screwed last year with Dignity Health (CA) and Cigna. Cigna has been unwilling to agree to terms that would allow Dignity Health to sustain services. so most of the doctors here on the Central Coast of California no longer take Cigna! (San Luis Obispo and Santa Barbara counties) AND I was already enrolled when all this took place. My employer didn't / couldn't do anything about it. Seems like I was the only Employee impacted! sucks! I have 3.5 more months to go on Cigna. Good thing we were fine and didn't need any medical assistance, except for my husband's meds. So it makes me leery and concerned about health plans! I hope MAP will be a really good way to go for us when I finally retire next year! I appreciate your great information :)
Peggy Whitecotton I had medicare with Humana Advantage for about 6 years when my cardiologist, primary doctor and Hospt ... Read more
Peggy Whitecotton I had medicare with Humana Advantage for about 6 years when my cardiologist, primary doctor and Hosptial stopped using Humana. I was given no prior warning from my doctors or Humana, But heard from the towns grapevine. I had one month to find something and also found out they were not taking any other advantage plans. So it was either change doctors which would mean going to another doctor in a town 35 miles away or get medicare with a supplement plan. I got the supplement plan. Yes, it costs me more a month, but I have no co-pays. With the advantage plan I had co-pays for everything, plus $300 a day for each in hospital stay up to 7 days and no co-pay with supplement,
Lilly Black Peggy, thank you for letting me know. That sucks you weren't given any warning!!! I appreciate your ... Read more
Lilly Black Peggy, thank you for letting me know. That sucks you weren't given any warning!!! I appreciate your input....as always, we learn from each other because insurance companies don't tell you anything. Thank you!
Greetings, Heart Warriors! I have some good news! I just had my Echo done, and my Cardiologist confirmed I am doing great! It will be 5 years this December ...Read more
Greetings, Heart Warriors! I have some good news! I just had my Echo done, and my Cardiologist confirmed I am doing great! It will be 5 years this December since my heart valve replacement. I do have some regurgitation from my other valves but nothing to be concerned about as he says people my age typically have some regurgitation in all valves. I have no chest pain, no palpitations, no panic attacks, but sometimes I still have anxiety which will wake me up at night.
I am learning to live with my tinnitus, and my Cardiologist also confirmed that it has nothing to do with my heart or valves. CBD, CBG and cannabis are my saving grace. As long as I can sleep at least 7 hours each night, the tinnitus is not intense. It's always there however, not one day of quiet! headaches and migraines have been greatly reduced. I lost 22 lbs and I'm working toward another 20 lbs. I am using the Paleo diet formula and it works really well! I am doing so much better than a year ago!
I also want to share some really interesting information that I learned about from Bicuspid Aortic Valve Foundation and BAV....please read:
Dr. Pickering, a research scientist, and Dr. Chu, an aortic and cardiac surgeon, have collaborated to study aortic tissue removed from human patients. They have published their findings, reporting on the existence and trouble caused by abnormal smooth muscle cells in the wall of the aorta.
According to Dr. Pickering, these abnormal cells produce an enzyme that eats away at the tissue around them, destroying and weakening the aorta.
Research Paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6562112/
Please take care of yourselves, listen to your body and keep things in perspective. You are #1! All we have is NOW!
ALL THE BEST TO ALL OF YOU!
Ascending aortic aneurysms constitute an important hazard for individuals with a bicuspid aortic valve (BAV). However, the processes that degrade the aortic wall in BAV disease remain poorly understood.We undertook in situ analysis of ascending aortas ...
Marie Myers Congratulations on your healthy check up! Thanks for the article link - this is very interesting info ... Read more
Marie Myers Congratulations on your healthy check up! Thanks for the article link - this is very interesting information .Wishing you many healthy years ahead!
Lilly Black Marie & Jennifer, thank you! I thought it was really interesting too. Hopefully this research will ... Read more
Lilly Black Marie & Jennifer, thank you! I thought it was really interesting too. Hopefully this research will create a path to new methods of managing BAV before the destruction occurs. Amazing!
Hard to believe that today, Dec 14, 2018, will be 4 years since my heart valve replacement! My heart is doing really well, so grateful! thanks to my incredible ...Read more
Hard to believe that today, Dec 14, 2018, will be 4 years since my heart valve replacement! My heart is doing really well, so grateful! thanks to my incredible heart surgeon, Dr. Sharo Raissi!
Not so great news, 2018 has been quite a roller coaster ride! I've been preoccupied with a new problem. Iβve spoken about in my journals. My symptoms started out with migraines, pressure headaches as if my head was in a vice grip, pain on the left side of my head including left ear tinnitus, and panic/anxiety attacks that I thought were seizures. I thought my body was giving up! There were multiple symptoms, and I felt vulnerable and sensitive to everything. The tinnitus was freaking me out, causing major anxiety, and would get quite loud in my left ear. An ear plug in my left ear is helpful as Iβve become very sensitive to noise, which also causes the head pain.
In the midst of all this, I went to 5 different doctors, my GP, an ENT doctor, 2 neurologists and a neuro surgeon. The 1st Neurologist took multiple tests, and basically found nothing! The 2nd neurologist found a benign meningioma tumor in my brain and about 10 punctuate microhemorrhages. He prescribed anti-depressants! But I refuse to take them. I am not depressedβ¦.I just want to know what is going on so I can fix it! He also said that the microhemorrhages are from the heart surgery, but the Neurosurgeon says that it is typical for an aging brain. I am 67 yrs old! The neuro surgeon recommended that I see him in a year with a new MRI to compare with the one from last year. And thatβs all I can do for now besides maintaining my health by eating right, getting enough sleep on a nightly basis and exercising.
After several months of frustration and devastation, sickness and generally feeling at a loss, I have finally come to terms with myself. Itβs been difficult, but it could have been worse. So I dusted myself off, pulled myself together and put things into perspective! I also found a great formula that is working for me, keeping migraines and pressure headaches at an all-time low. I sleep better and I feel better. I meditate, walk more often, and eat healthier. My headaches, migraines, and symptoms were greatly reduced! CBD is my miracle medication. I take half a dropper under my tongue each night, and I vape a mixture of CBD, & CBG throughout the day. It keeps me calm, headache free, and I can sleep at night! No side effects whatsoever, so awesome! It helps with arthritic pain, inflammation, nausea, and mood. It also helps keep the tinnitus volume low. As long as I can sleep and manage my headaches and migraines, the tinnitus is more manageable! I am hanging in there!
Back in July 2018, saw my cardiologistβs assistant, and all is great with my heart! I am due for an Echo next July 2019. My only problem is a bit of tightness in my chest when walking on an incline, but it doesnβt stop me from doing anything that I want to do. I am grateful every day for 4 successful heart years! I wish all of you the best experience. It is a journey that no one else can understand except for us, who have gone through itβ¦..we are heart warriors! May you enjoy the holiday seasonβ¦this too shall passβ¦..one day at a time!
Rita Savelis Congrats on 4 years....but sorry about your rough time this year. Keep up the CBD and anything else t ... Read more
Rita Savelis Congrats on 4 years....but sorry about your rough time this year. Keep up the CBD and anything else that helps. You are your own best doctor. Take care Lilly.
Catie B It's great to have word from you, Lilly. I'm so glad you've found an approach that helps you and redu ... Read more
Catie B It's great to have word from you, Lilly. I'm so glad you've found an approach that helps you and reduces your symptoms so much! I know it took awhile to get there. Wonderful news that your heart is doing great! Best to you!
Barbara Wood Congratulations on 4 years Lilly! Sorry that you've been troubled by migraines, vertigo - and glad to ... Read more
Barbara Wood Congratulations on 4 years Lilly! Sorry that you've been troubled by migraines, vertigo - and glad to hear that you have found a good way to deal with it. Your attitude is admirable! Great news about the heart health! Best wishes:).
Cheryl Batzing Lllly, hey heart friend! Would love to catch up via text or phone call! Glad your heart is doing wel ... Read more
Cheryl Batzing Lllly, hey heart friend! Would love to catch up via text or phone call! Glad your heart is doing well. Sorry for the other issues. My 4 year anniversary is Dec. 16!
Lilly Black Rita, thank you. I will. You are correct. No one can tell me what is really going on until next year, ... Read more
Lilly Black Rita, thank you. I will. You are correct. No one can tell me what is really going on until next year, anyway. So I may as well keep moving forward as positively as possible.
Catie, thank you. I am very lucky and grateful regarding my heart.
Barbara, thank you. I don't have vertigo....maybe if I did there would be answers. Right now it is a waiting game.
Cheryl, congratulations!! how are you feeling? sure.....just let me know when is a good time!
I hope that all of you are doing well. One thing that I am finding out especially with age is when I over do it, it takes a toll on me. Since I still work full time I'm forced to pace myself. Take care.....take it easy, and thank you for reaching out to me :) all the best!
Shannon Gray Oh Lilly, I am so grateful to read your update and so very sorry youβve had these challenges. Conti ... Read more
Shannon Gray Oh Lilly, I am so grateful to read your update and so very sorry youβve had these challenges. Continued prayers! Excellent news regarding your heart!
Lilly Black Thank you, Shannon! Challenging indeed. We all have some challenges to face itβs just how we cope a ... Read more
Lilly Black Thank you, Shannon! Challenging indeed. We all have some challenges to face itβs just how we cope and come to terms with them. Hope you are doing well. I wish you happy holidays!
My heart is doing well. No problems at all. However for the last 9 months, I have been suffering with Migraines and Tinnitus. My Surgeon authorized an MRI/MRA ...Read more
My heart is doing well. No problems at all. However for the last 9 months, I have been suffering with Migraines and Tinnitus. My Surgeon authorized an MRI/MRA exam, which was completed at the end of April 2018.
Before I get into further details, I want to share my most recent great discovery, which helped with my head migraines, stomach migraines, anxiety, insomnia, and heart flutter - CBD (Cannabidiol)! I have been using CBD Oil since May 2018. I place 1/3 of a dropper under my tongue, every night before I go to bed. After lunch, I take another 1/4 dropper under my tongue. CBD has reduced my migraines substantially, which also reduces the intensity of the Tinnitus.
Now for the gruesome details....after seeing 2 Neurologists, the first one said I was normal no problems found. He took multiple tests: Carotid ultrasound, blood sedimentation test, EEG, and EKG and confirmed they were normal. So I asked him, so why am I still suffering? (this was before I started CBD)
The 2nd Neurologist reviewed the MRI/MRA carefully. There were no aneurysms, however he confirmed there were multiple cerebral microhemorrhages due to the Cardiopulmonary bypass machine! He also saw a benign brain tumor situated in the front of my brain. Even while I am writing this, it's so hard to digest! He said the benign brain tumor is nothing to be concerned about. Really? He also said that 1 out of 20 people my age (66) have benign brain tumors. Hard to believe, but he is a Neurologist who studied at Harvard.
QUESTION: can anyone on this site relate? have you been diagnosed with cerebral microhemorrhages? or benign brain tumor?
In addition, the 2nd Neurologist prescribed anti-depressant medication called Amitriptyline. I have not taken it nor do I plan to. When I read the side affects, and risks, I called back his office. I have NEVER taken an antidepressant medication and I am scared to.
At this point, I would love to hear back from you. Do you or do you know anyone who can relate to my brain problems?
Thank you....I'm desperate. What can I say!? But I'm okay...trying not to panic, and will continue the CBD, which the Doctors confirmed it is fine to continue, since it is helping me. In addition, the 2nd Neurologist wants to see another MRI in a couple of years to keep an eye on the microhemorrhages and the tumor!!! I am hoping my brain will heal.
Steve Farthing You weren't clear if the 2nd neuro prescribed amitriptyline for depression or for headaches. He may ... Read more
Steve Farthing You weren't clear if the 2nd neuro prescribed amitriptyline for depression or for headaches. He may have said it is an antidepressant since using it for headaches may be an off-label use. The dose for headaches is very small, possibly 25 mg which means side effects are greatly reduced or not there. The dose as an antidepressant would probably be 5-10 times as much which you can look up. I take one every night for headaches and sleep; reduces the frequency and severity of headaches. Works quite well and fairly inexpensive. If at a low dosage, you may want to reconsider whether to try it. You can possibly break them in half or fourths at first to try it. Headaches are no fun.
Susan Lynn What an incredible story. I am sorry to hear about the lingering effects of your bypass. I had mig ... Read more
Susan Lynn What an incredible story. I am sorry to hear about the lingering effects of your bypass. I had migraines before surgery and still have them now. I've had success with taking Imitrex at the earliest onset and it's worked for me for many years. Thanks for the information! All the best to you.
Debbie Chatzky Are the migraines and tunittiis a result of the microhemorages? I have migraines but had them before ... Read more
Debbie Chatzky Are the migraines and tunittiis a result of the microhemorages? I have migraines but had them before surgery also. Take an antidepressant for the migraines but it causes insomnia. Steve which antidepressant helps with both headaches and insomnia?
Carmel Robertson Hi Lilly. Sorry to hear you are still worried by migraines and tinnitus. I too had a number of cereb ... Read more
Carmel Robertson Hi Lilly. Sorry to hear you are still worried by migraines and tinnitus. I too had a number of cerebral micro bleeds but mine were picked up shortly after my OHS. The neurologist I saw said it is quite a rare occurrence; he had only seen it twice before. In both cases is was after a minimally invasive mitral valve repair as was mine. He has followed one case for several years and there has been no change on this patients MRI. He now believes it is a once off occurrence caused by the operation. I have had optical migraines since the operation, daily until the last month, now once a week. I also have tinnitus but did so before the operation. My migraines donβt affect the tinnitus. Interestingly, my husband has a benign tumour in his brain that the doctors believe he has had since birth. They arenβt worried about it at all.
Lilly Black Steve, the Neuro said it was for the headaches. I am not depressed. Iβm sad and in shock! Yes 25mg ... Read more
Lilly Black Steve, the Neuro said it was for the headaches. I am not depressed. Iβm sad and in shock! Yes 25mg was prescribed. Thank you for sharing your experience. Do you know the reason for your headaches? Susan and Debbie thanks for sharing too.....I have had migraines for years which I talk about in my journal. They were almost nonexistent after my valve replacement. Suddenly in October 2017 migraine returned but with tinnitus this time! So Iβm assuming itβs related. I also get headaches so bad like my head is in a vice. I took fiorinal for pain but I managed with very few doses and only upon onset of headache. I will find out more information. I just found all this out yesterday! Will definitely write more as I learn more about it. For now Iβm working on trying to remain calm with CBD. Anxiety wonβt help and will impede on the healing process if any. This Neuro has scheduled more tests. He will not refer back to the first doctorβs tests. Lots to think about and decide π
Mary Woods Please don't be frightened of amitriptyline. I have taken 20 or 30 mg at night for years for lupus a ... Read more
Mary Woods Please don't be frightened of amitriptyline. I have taken 20 or 30 mg at night for years for lupus and fibromyalgia. It helps with pain and sleep. I have a slightly dry mouth in the morning, but that's all. It's definitely worth trying.
Shannon Gray Thinking of you, Lilly. My goodness, how are you feeling about all thatβs discovered? I M proud of ... Read more
Shannon Gray Thinking of you, Lilly. My goodness, how are you feeling about all thatβs discovered? I M proud of you for seeking good medical care. I have taken amitripyline for several years... I donβt sleep and do suffer from depression and anxiety. Please keep us updated.
Lilly Black Mary, thank you. I have had so many bad interactions with drugs, they just don't react the same way ... Read more
Lilly Black Mary, thank you. I have had so many bad interactions with drugs, they just don't react the same way as with other people. Shannon, I was quite freaked out to be honest!! but I don't blame anyone or anything, my life was saved with the heart surgery. There was no other choice except to get my valve replaced. I was in surgery for 12 hours during the second surgery, as per what my son and my husband told me. I am still grateful for all that I have and I want to continue living my life with the gratitude that I feel on a daily basis! I'm sorry that you are suffering of depression and anxiety and I really appreciate that you have reached out to me. All we can do is put one foot in front of the other and keep going.....and don't ever give up! :)
Lilly Black Carmel, thank you.....are your brain bleeds stable? meaning, have the brain bleeds stopped? interest ... Read more
Lilly Black Carmel, thank you.....are your brain bleeds stable? meaning, have the brain bleeds stopped? interesting about your husband. Is your tinnitus intense, daily, and all the time? do you think you will always have tinnitus?
Carmel Robertson Hi Lilly. Regards the micro bleeds, I donβt know if they are stable. All I can go on is that the ne ... Read more
Carmel Robertson Hi Lilly. Regards the micro bleeds, I donβt know if they are stable. All I can go on is that the neurologist I saw has been following one case over several years and their MRI hasnβt changed meaning there have been no further bleeds. I have found that I was pretty knocked around by the operation and has taken a while to get better. Initially, I had trouble rembering but that is coming back. Iβm sure having the daily migraines didnβt help either! Anyway, I am back at work as a senior Art teacher abet part time. Regarding my tinnitus; it is intense at times particularly when I am tired. I am careful what I eat as this can affect it as well. Having said this it is much better than when I first got it and I try to keep busy and not focus on it. A lot of the time I am not aware of it. My tinnitus has never gone away since the initial attack and I donβt expect it will as mine is related to mild hearing loss.
Lilly Black Hi Carmel. Well it seems you and I have a lot in common in terms of micro bleeds and tinnitus. It's ... Read more
Lilly Black Hi Carmel. Well it seems you and I have a lot in common in terms of micro bleeds and tinnitus. It's so crazy! My head feels broken....at times it feels worse than the heart surgery! but what you have described brings hope. I do hope my micro bleeds don't persist. My husband and I have been discussing meditation, and healing. I will do everything in my power to at least keep myself healthy....eat right, exercise, meditate, and stay calm. For me the tinnitus gets worse when a migraine comes on, almost as if the tinnitus is prodrome to the migraines. I don't hear it/feel it as much when I am outside gardening/exercising/walking/swimming. If it is driving me crazy inside the house, I will listen to relaxing music with my ear buds on.....it helps. Thank you so much for sharing....you have made my day! :)
Carmel Robertson It is good to know you arenβt on your own! All the best.
After 3 years of success with my heart, I am now not doing so well! I know it could be worse, but I have not managed to get any relief in terms of the migraines ...Read more
After 3 years of success with my heart, I am now not doing so well! I know it could be worse, but I have not managed to get any relief in terms of the migraines and tinnitus. Why after 3 years have my migraines returned, and now triggering tinnitus?
I saw my family doctor and an ENT specialist. My family doctor was no help whatsoever. The ENT specialist saw nothing but he recommended to get my hearing tested. So I will go to that appointment on the 20th to rule out problems with my ear(s). I have been sad and depressed because these migraines and tinnitus are a roller coaster ride! I am concerned specifically because it happened suddenly one day mid-October 2017. I'm trying desperately to find out what happened and also trying everything in my power to stay healthy, have enough sleep so a migraine will not occur. I'm meditating, walking, and resting more than I ever did. The volume of the tinnitus is up and down, and driving me crazy! I do nightly tinnitus treatments by laying down, meditating, and listening to on-line Tinnitus treatments, which is basically listening to a variety of white noise. It absolutely is helpful but of course is not a cure.
A lot of information is out there, and Doctors have different opinions. There are many reasons why tinnitus occurs, so basically I'm trying to find mine.
I have become so desperate that I will reach out to my heart surgeon to find out if there is something going on in my brain; aneurysm, tumor, whatever! I plan to contact him on Friday when he returns from his travels. I want an MRI! Hopefully he can recommend one since I am prone to Aneurysms.
If anyone reads this and has anything to share, please let me know :(
Carmel Power Hi Lily. Sorry hear about the migraines and tinnitus. I have had that experience in the past but afte ... Read more
Carmel Power Hi Lily. Sorry hear about the migraines and tinnitus. I have had that experience in the past but after seeing a neurologist, took low dose aspirin and that stopped the migraines. I no longer take it and still rarely have migraines. I did have a migraine recently after an angiogram and was told this was caused by dehydration so maybe try drinking some more water. Hope this helps you.
I have constant tinnitus but have learnt to I manage this issue.
Phyllis Petersen Oh no! That's awful. I have tinnitus, but most of the time I can ignore it. It gets worse when my cer ... Read more
Phyllis Petersen Oh no! That's awful. I have tinnitus, but most of the time I can ignore it. It gets worse when my cervical spine is strained at all. Thankfully, after having migraines since I was a teenager, they greatly tapered after menopause. I've only had optical ones since surgery. Have you made an appointment with a neurologist? Since they came on suddenly, I think it's important to push the doctors to find what's going on. Thoughts and prayers for a quick solution!
Gerald Poulton Hi Lily, sorry to hear about your problems but I think it is common. I had tinitus and migranes befor ... Read more
Gerald Poulton Hi Lily, sorry to hear about your problems but I think it is common. I had tinitus and migranes before surgery, the tinitus improved but still have it sometimes. The general rule for a Dr is to send you for a hearing test when you report tinitus. As far as my migranes I went from one most days and somedays two or even three but after surgery they completely disappeared for about 4 months, but now at, oh my I forgot my 6 month bday on the 9th, I am getting them occasionally. A big trigger for me has always been light flashes, bright sun βοΈ Or especially a sunglare off of a car or mirror, I did find turning down the brightness on my computer helped a lot. Hope you find some answers π
Shannon Gray I am so sorry, Lilly. Prayers for resolution and feeling much better.
Catie B I'm so sorry you have been suffering! I hope you can get real answers very soon and that relief is on ... Read more
Catie B I'm so sorry you have been suffering! I hope you can get real answers very soon and that relief is on the horizon.
Sophia Ridley Lilly, Iβm sorry to hear this. My mum has had pulsating tinnitus for a few years, she just had to g ... Read more
Sophia Ridley Lilly, Iβm sorry to hear this. My mum has had pulsating tinnitus for a few years, she just had to get used to it. π Thereβs some connection to B12 levels, or that the bone has thinned near the ear allowing the pulse to be heard. If I get a pulse in my ear at night (much less post op) then changing pillows from feather to foam works.
With migraines, mine are triggered by tiredness, low BP, cramped places and bright lights so I do best to avoid and I drink nearly 3 litres daily.
I hope you get the MRI, if nothing more to put your mind to rest. Always amazes me how many of us heart patients have aura migraines post op... weβre just crying out to be a captive research study!
Lilly Black Thank you All! I appreciate you taking the time to share your experiences. It really helps a lot! I h ... Read more
Lilly Black Thank you All! I appreciate you taking the time to share your experiences. It really helps a lot! I have been taking low dose aspirin for over 10 years, I try to stay hydrated, and I'm aware of all my triggers, which are a lot! Tiredness/sleeplessness is the worst trigger for me. I have been on B12 complex for years. I eat fresh farmers' market produce, fish 2 or 3 times a week, and have been post-menopause for at least 12 yrs.
I spoke to my cardiologist/surgeon 2 days ago, and he recommended a brain MRI, and also said I should have had one long ago to rule out aneurysm. I will be making those appointments as soon as possible. I admit that I freak out over everything, but I believe in being aware of the problems that can occur with BAV. I had 2 aunts; 1 who died of sudden death due to her heart problems at 61 yrs old, the other aunt died of a stroke due to a brain aneurysm, and my dad currently has a 2.9 cm abdominal aneurysm. My doctor and I feel it is best to rule out any problems in my brain. I have lived with migraines for over 35 years, and have experienced seizures after both heart surgeries. I am currently on a roller coaster ride of tinnitus, and migraines. I already feel relieved to know that an MRI will tell me what is going on! If it turns out that they find nothing, I will be thrilled! I'll keep everyone posted. Thank you, thank you for reaching out....it means a lot! Take care, and keep well.
Gerald Poulton I am also surprised with your symptoms and your family history that they havent done this sooner. Ta ... Read more
Gerald Poulton I am also surprised with your symptoms and your family history that they havent done this sooner. Take care if you π
Gerald Poulton Hey Lily, any luck with this ? I am still almost migraine free and sure hope it stays that way.
Kristen Kelly Iβm sos prey to hear of your migraines Lily. I also suffer from them. I had a horrible bout that la ... Read more
Kristen Kelly Iβm sos prey to hear of your migraines Lily. I also suffer from them. I had a horrible bout that lasted 3 months this passed winter. Definitely reach out to the MD, get yourself an MRI and ensure thereβs no issue with any vessels.
xo
Lilly Black Gerald and Kristen, you are so sweet to be checking on me! I am actually still working on my problem. ... Read more
Lilly Black Gerald and Kristen, you are so sweet to be checking on me! I am actually still working on my problem. I did contact my heart surgeon, and with his help, he managed to get me approved for the MRI/MRA. The MRI/MRA was done on 4/27/2018. Images were sent to my surgeon, however I have not yet heard back. He lost his wife recently to cancer, and then decided to return to work. I hate to put the pressure on him, but would love to hear his opinion. It's odd that I have not heard back from him because typically he has always replied almost immediately to my concerns. In the meantime, I contacted my family physician's office and asked to be referred to a Neurologist. I saw the Neurologist on May 23rd. He requested many different tests, including the MRI/MRA. I have a follow up appointment with him on June 19, and he will provide the results of all my tests:
1. MRI & MRA, 2. an EEG, 3. a physical exam, 4. sedimentation rate-westergren blood work, 5. eye exam, and 6. Carotid ultrasound. I will absolutely keep you posted. I am hoping for the best, but if they find nothing, I will be devastated. I don't want to have any negative feedback obviously, but after all these tests, and money spent on these tests, I want them to find something and then help me to resolve my problems. We shall see....I still have tinnitus, still have pressure headaches. Migraines have calmed down this week. When I stand up, my head pounds. I have done so much research and spoke with others who have tinnitus and migraines and haven't heard of anything helpful at all :( But I will not give up and I'm planning to write a post when I get some answers. Thanks again for checking in.....so nice of you! :)
Phyllis Petersen It's good to hear that you are being taken seriously and the doctors are following up. I hope you fin ... Read more
Phyllis Petersen It's good to hear that you are being taken seriously and the doctors are following up. I hope you find a simple solution, but I know that any solution would be better than not knowing. All the best for getting answers and finding relief.
Lilly Black Thank you so much, Phyllis. I appreciate it! Yes, absolutely... I agree. :)
Gerald Poulton Hi Lily, I havent been on for a while, busy living life and being happy. I hope you are doing better ... Read more
Gerald Poulton Hi Lily, I havent been on for a while, busy living life and being happy. I hope you are doing better π
3 years have come and gone...and I know where the years went. I thought about my heart everyday, and tried to live as normally as I could and I didn't let anything ...Read more
3 years have come and gone...and I know where the years went. I thought about my heart everyday, and tried to live as normally as I could and I didn't let anything stop me from living life fully!
But I must say, the last 3 years were very difficult at first. I couldn't help but feel that I was alive, but living in someone else's body. I was traumatized and had major PTSD for about 1 year! I was living in a world that I couldn't make a connection with, and it was weird.
With all that I have been through, I've become a pro with practicing mind over matter with meditation and visualization as I was preparing for surgery and trying to overcome pain post surgery. I may have unconsciously separated from my body. I was in a daze for a long time. I couldn't relate to anything, or anyone, and I didn't want to live. I felt like I came back to hell! nothing felt right...I was scared and I hated everything around me. Work, relationships, my house, everything felt so overwhelming to me, as if I didn't have the strength to cope or manage my life anymore. I was devastated, and just wanted to die! My son and my husband were here for me every step of the way.
Fast forward to today, after working hard and trying to overcome the PTSD, I feel stronger than ever. "Time will tell", time is key! It takes time to heal, time to recover, time to build strength, time to feel confident and time to overcome problems. It also takes patience, especially when all you want is to feel better and make the pain and fear go away.
Here I am 3 years later, I am happy to report that I had no physical complications whatsoever. My cardiologist diagnosed me last August with good health, and a strong beating heart! I have a good paying job which I work 100% remote, a wonderful family that loves me, and I love them so much! I'm happy!!
My 3 year anniversary update:
1 I feel that my sternum has healed 97%, I have no more pain in my sternum and chest area. But when I move my right arm out and above my head, there is a small pain on the right side of my sternum. But I only feel it in this position. I'm not concerned. They cut through the sternum twice, once in 2007 and once in 2014....no wonder!
2 I have no chest pain, no shortness of breath, and I can walk on inclines quite well.
3 At times, I can feel what seems like are PACs or PVCs. They began occurring this year. They are far, few between. I'm not concerned, because I just saw my Cardiologist in August and he was not concerned.
4 My brain is doing so much better. I have had only one migraine related seizure in June and I think it was because I was on a red-eye flight and didn't sleep for 24hrs. My concentration level and memory has improved substantially.
5 PTSD has greatly subsided. I feel like I am connected again, and my attitude is so much better about life. This has a lot to do with my son and daughter-in-law moving closer to me, only a 40 minute drive.
On a not so positive note and not heart related...
1. I am recovering from a recent bout of a virus that begun at the beginning of October that has caused persistent headaches, neuralgia, nausea and tinnitus. This problem has caused my migraines to return and I felt miserable. I'm still under Doctor care.
2. My son's Dad lost everything with hurricane Irma and Maria in Puerto Rico.
3. My son's wife's parents lost everything in the Santa Rose fire.
4. My step-son in England and his girlfriend have a baby girl, and they are going through financial hardships, and almost split up.
Lots of stress around me, lots of sadness, and the world is going crazy! But I manage to get through each day just being so grateful that my family is close by, and that we live in one of the most beautiful parts of the Country, the Central Coast of California. We eat fresh produce locally grown, fresh local fish, and meat, and my Cardiologists are nearby. I am working towards a full retirement once a few things are paid off. I am so grateful my heart was fixed and I'm doing so well. I'm so thankful for what I have! I have chosen to let go all of my grievances and to bite the bullet and "come back" to life, accept the things that I cannot change, and have the courage to move forward, and just be grateful.
There is a silver lining! You may not see it through the clouds, but it's there. Take one day at a time, keep fighting, keep trying and you will make it! Take care of yourself, you are #1!!
Shannon Gray Thank you for sharing, Lilly! Many gentle hugs to you!
Rita Savelis Oh, Lilly, thank you for your very honest post, about the positives and negatives, both of which are ... Read more
Rita Savelis Oh, Lilly, thank you for your very honest post, about the positives and negatives, both of which are always there. Wishing you a future of peace of mind and no heart complications.
Stress and sadness needs to be acknowledged and lived through. It is ever present and a juxtapostition to the happy moments that are also there. You are finding a way to live with both, which is what one does.
I congratulate you.
Aubrey Skelly Hi Lilly, at last someone with honest. You could be talking about me. I'm one year on a few weeks ago ... Read more
Aubrey Skelly Hi Lilly, at last someone with honest. You could be talking about me. I'm one year on a few weeks ago having had the Aortic replaced and 5 bi-passes. It's not easy but at last I'm no longer in as much pain. but there is always idea that it will get better eventually. Thanks for sharing. :) I'll be putting up my one year experience in a few days, when I can concentrate long enough to type it up.
Daniel Kung Hi Lilly: Thank you very much for your sharing! You are a very courage lady. With all the challenge ... Read more
Daniel Kung Hi Lilly: Thank you very much for your sharing! You are a very courage lady. With all the challenges in your health and people around you, you still maintain such a positive attitude towards life. It is wonderful. You are a great role model for me to follow!
Adam Pick Lilly, Thanks for your honest and powerful share. I can relate to much of what you describe. Stay str ... Read more
Adam Pick Lilly, Thanks for your honest and powerful share. I can relate to much of what you describe. Stay strong. Stay courageous. You're right. Let's focus on the "silver linings". My thoughts are with you. I really appreciated the opportunity to meet you at Patient Day!!! Hugs, Adam
Brenda Miller Hi Lilly... I can so relate to what you have shared.. thank you for sharing..I have had similar exper ... Read more
Brenda Miller Hi Lilly... I can so relate to what you have shared.. thank you for sharing..I have had similar experiences...super powerful words of advice to each and everyone of us heart brother and sisters..thank you for your muchly appreciated honesty..stay positive ...take care
Cheryl Batzing Hey Lilly! Happy anniversary of a renewed heart my dear heart sister!
Lilly Black Thank you.....thank you to all of you. I believe in the power of sharing our feelings and learning fr ... Read more
Lilly Black Thank you.....thank you to all of you. I believe in the power of sharing our feelings and learning from each other. It is so helpful in difficult times and in good times. Happy holidays!
Ray Farmer Lilly thank you for sharing this, I feel much the same way, not really connected with the world and a ... Read more
Ray Farmer Lilly thank you for sharing this, I feel much the same way, not really connected with the world and also somehow vulnerable, as you say take one day at a time.
Lilly Black Ray, thank you for the acknowledgement. It will get better...reality sinks in when you begin to reali ... Read more
Lilly Black Ray, thank you for the acknowledgement. It will get better...reality sinks in when you begin to realize that life and the world still evolves (positively and negatively) even when "you're not into it". One day at a time.... :o)
What causes a Bovine valve to fail? I was told that my 23mm Edwards Sciences Magna Ease bovine valve has a shelf life of approx 18 years. What will cause the ...Read more
What causes a Bovine valve to fail? I was told that my 23mm Edwards Sciences Magna Ease bovine valve has a shelf life of approx 18 years. What will cause the bovine valve to fail sooner or last longer? what are the variables? is it like a tire on a car whereby the amount of mileage you drive will wear out your tires, so the more active you are the more use on your valve? or is it the food you eat, or your blood type? My surgeon couldn't tell me the answer 3 years ago! Does anyone know? I will do some research as well to see if there is any current information I might find.
Kathi Mancuso No I don't know..... I just got the same as you 7 weeks ago !
Rose Madura All good questions. I think each of us is so different that it's hard to say. Do share with us what ... Read more
Rose Madura All good questions. I think each of us is so different that it's hard to say. Do share with us what you find out. If there's something we should or could to to make it last longer, I'd sure like to know.
Civita Fahey I was told it really depends on the person.. they don't really know what makes it last longer or shor ... Read more
Civita Fahey I was told it really depends on the person.. they don't really know what makes it last longer or shorter on people..pretty much the same as how fast the stenosis can go from mild to severe.. depends on the person, genetic make up etc. the average life span for todays tissue valves is 10-15 yrs sometimes more.sometimes less. .. Arnold Schwartznegar has had one for over 20 years.. not sure which one he received and I've read he is still very active with weights etc, so.. I wish I knew..
Bob Fessler I thought it was interesting that my surgeon said after 20 years 80% of the Magna Ease valves were st ... Read more
Bob Fessler I thought it was interesting that my surgeon said after 20 years 80% of the Magna Ease valves were still going strong. It's the valves that fail early that screw up the average. I hope he's right about this and I hope I have one of the good ones.
Rita Savelis Oh gosh Lilly, if they knew, they'd tell you. It depends on so many factors, but I don't think you ca ... Read more
Rita Savelis Oh gosh Lilly, if they knew, they'd tell you. It depends on so many factors, but I don't think you can control those factors. We want so much to be proactive and do the right thing, but so much is out of our control.
Wishing you a peaceful December.
Shannon Gray What great questions! All my cardiologist shared was to not take calcium supplements... they have fou ... Read more
Shannon Gray What great questions! All my cardiologist shared was to not take calcium supplements... they have found a connection to the valve calcifying quicker when taking a supplement. Let me know if learn of anything else!
Civita Fahey Shannon, I was wondering about the supplements, I try to avoid things with added calcium just because ... Read more
Civita Fahey Shannon, I was wondering about the supplements, I try to avoid things with added calcium just because I figured why add it, but, I wasn't told stay away..
Shannon Gray I want to learn more, too! I have skeletal issues...scoliosis and kyphosis...along with osteopenia ( ... Read more
Shannon Gray I want to learn more, too! I have skeletal issues...scoliosis and kyphosis...along with osteopenia ( weakening of the bones), and my Drs tell me to take calcium supplements...but nope...I'm listening to my cardiologist at CC and not taking them. I do take Vitamin D. It's such a complex topic.
Bob Fessler Shannon. I'd want to hear it from a couple sources before I'd stop taking calcium supplements that ... Read more
Bob Fessler Shannon. I'd want to hear it from a couple sources before I'd stop taking calcium supplements that I needed to stay healthy. I wonder if your cardiologist recommends avoiding milk and other products with calcium. I love my ice cream and whipped cream too much.
Shannon Gray He didn't refer to foods...just the supplements. I plan on asking again in January when I see him aga ... Read more
Shannon Gray He didn't refer to foods...just the supplements. I plan on asking again in January when I see him again. There is also research done on Vit K2, which has shown to help delay the calcification process. It aids in putting the calcium where it belongs ( our bones), and not in our arteries or valves. I have a connective tissue disorder, so I'm not sure if this is for me, but I will speak to my Dr about this, as well.
Lilly Black Everyone, I found some information online presented by the National Center for Biotechnology Informat ... Read more
Lilly Black Everyone, I found some information online presented by the National Center for Biotechnology Information, U.S. National Library of Medicine (NCBI/NLM) Shannon is on the right track. Calcification is a huge factor causing deterioration of your valve. Consuming saturated fats, and health problems can cause calcium deposits. There is a lot of information on the internet about calcium and also medication on how to eliminate the calcium. Be careful what you read....medical sites are best. And talk to your doctor!
In addition, Ewards Lifesciences, who made my bovine valve, continues to improve on anti-calcification methods. Why would they if it wasn't crucial to life of the valve....as an example:
The Carpentier-Edwards ThermaFix process is the only anti-calcification technology designed to confront both major calcium binding sites
Here's the link from NCBI:
Calcification and Oxidative Modifications Are Associated With Progressive Bioprosthetic Heart Valve Dysfunction
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5524104/
Conclusion
Both increased BHV leaflet calcium levels and elevated oxidized amino acids were associated with bioprosthesis dysfunction necessitating reoperation; however, BHV calcium levels were not a determinant of implant duration, indicating a potentially important role for oxidized amino acid formation in BHV dysfunction.
Bioprosthetic heart valves (), fabricated from glutaraldehydeβpretreated bovine pericardium or porcine aortic valves, are widely used for the surgical or interventional treatment of heart valve disease. Reoperation becomes increasingly necessary ...
I've been trying to cope with head pain, and the buzzing and high pitched sound in my left ear for several days. I took myself to urgent care on Friday. They ...Read more
I've been trying to cope with head pain, and the buzzing and high pitched sound in my left ear for several days. I took myself to urgent care on Friday. They found nothing, but suggested to take Sudafed Congestion in case I may have congestion in my head and sinus area. The doctor also thought it may be migraine related, but the Sudafed will rule it out. Began taking the Sudafed since Friday then went to bed early cause I was miserable. Every sound hurt my head and ear! I did get a little relief but the tinnitus is still very bad. So annoying! It's been 3 days. On top of this, I have a huge CEP exam on Saturday which I am travelling 5 hours to the testing site. I hope this goes away and I hope this is not going to get worse, and that it is not related to my heart in any way. Has anyone on this site ever dealt with this issue and if so, what did your doctor tell you? I am currently seeking and ENT doctor to make an appointment.
Gerald Poulton Sorry to hear that Lilly, I get migranes and have tinitus but had both before my OHS, actually my mig ... Read more
Gerald Poulton Sorry to hear that Lilly, I get migranes and have tinitus but had both before my OHS, actually my migranes are considerably better since my operation and my tinitus is not constant like it used to be. I hope you find some answers and good luck on youe CEP exam π
Noreen Kitchen I had my aortic valve replaced March of this year with a mechanical valve and will be on Coumadin fo ... Read more
Noreen Kitchen I had my aortic valve replaced March of this year with a mechanical valve and will be on Coumadin forever. I also had a ringing in my right ear that actually caused me to lose my hearing in that ear for a while. I saw a ENT that said it was a very rare side effect from surgery which I still have a hard time figuring out. One of the physicians that I know very well said he thought it was from unstable inr and getting a very small emboli in my ear. It still seems odd to me but itβs a very rare thing Iβm told. I was put on a course of strong antibiotic and prednisone for a short time and I did get some hearing back. Last hearing test I was told I have 60% hearing in that ear. Loud noises or high pitched noises aggravate it but I feel very lucky that my heart is healthy. I hope that yours gets better.
Lilly Black Gerald, thank you. My migraines and tinnitus have greatly subsided since my heart valve replacement a ... Read more
Lilly Black Gerald, thank you. My migraines and tinnitus have greatly subsided since my heart valve replacement as well! that's why I am surprised that I am experiencing this now. When I complete my exam, I will focus on this to get some answers. Question: you may know, but I am Canadian as well, and my dad and sister live in Quebec. How does Canada treat migraines, and how do they treat tinnitus? I finished the Sudafed, and now I am taking Fiorinal for my migraine......trying to see if this is congestion, or Migraine. So far, in my research of medical sites, there really is no cure for tinnitus and furthermore, everyone has a different opinion about it. I'm hoping that this is migraine related so that I can continue the meds and feel better for my exam! :(
Lilly Black Noreen, I'm sorry about your hearing loss! I guess 60% is better than losing your hearing. I do hope ... Read more
Lilly Black Noreen, I'm sorry about your hearing loss! I guess 60% is better than losing your hearing. I do hope it will get better for you. I found that wearing an ear plug helps protect my ear from loud sounds, and hopefully protect it from any damage. I don't know if I have ear problems or tinnitus or both. I will definitely follow up. Thank you for taking the time to reply. I don't doubt that heart surgery can cause other problems. One of my surgeons said to me when I complained about numbness in my leg from the heart catheter that this is the price one pays when having such risky surgery....or something like that, can't remember the exact words, but I got the feeling that they can only do so much to protect their patients from causing additional problems while trying to save their life with heart valve replacement surgery. I hope that you continue to progress, and I wish you the best!
Gerald Poulton They have several different prescription medications for migranes but I dont take any. Years ago I u ... Read more
Gerald Poulton They have several different prescription medications for migranes but I dont take any. Years ago I used to get sinus headaches and only knew what a migrane was because my ex brother in law got them. Then one day I stopped getting sinus headaches and started getting migranes with the aura as well. I went to specialists and tried the prescription medication but did not like the side affects. Now if they are not to bad I plow through it, dont like medication, if it is bad I take Tylenol ex strength. Many doctors say asperin but it doesnt work for me. As for the tinnitus I used to get it once in a while and then one day it didnt stop, I went to the doctors and they say there is no cure, did my research and other than a couple herbalists everyone else said no cure. Since my operation now it goes away sometimes and is not as loud. I just got used to it and live with it.
Now I also have to learn to get used to a louder or more pronounced heart beat, especially at light if my head ear is on the pillow. Glad I got the tissue valve, not sure I could deal with this and a clicking valve π
Maybe it is true, what doesnt kill us makes us stronger πͺ
Lilly Black Gerald, thank you. Interesting! so not much different than the U.S. I'm like that as well.....I don' ... Read more
Lilly Black Gerald, thank you. Interesting! so not much different than the U.S. I'm like that as well.....I don't like medication. I have been a migraine sufferer for many years, and I will take Fiorinal upon onset. I've tried others and the side effect is worse than the migraine itself. I have learned that if I don't take at least 1 pill upon onset, it can last for days. In addition, migraines make me nauseous, so I have to take it. There are no side effects with Fiorinal, for me, and I've taken this drug periodically for about 25 years. Yesterday, I tried a different approach. I took 1 Fiorinal every 4 hours. Lo and behold, today about 95% of the tinnitus is gone. What I have learned is that the tinnitus is a symptom of something else.....for me, it was migraine related. Not heart, not sinus, but migraine related. I am so happy I got it figured out for myself! Again thanks so much for your input. :)
Gerald Poulton Hi Lilly, how did your test go ? Hope your feeling better π Just realized again today how few migr ... Read more
Gerald Poulton Hi Lilly, how did your test go ? Hope your feeling better π Just realized again today how few migranes I get since the operation, so far they are almost gone π
Lilly Black OMG! my test was so stressful....4.5 hrs., subjects were SEC, taxes, Equity Comp, and Law. Grueling, ... Read more
Lilly Black OMG! my test was so stressful....4.5 hrs., subjects were SEC, taxes, Equity Comp, and Law. Grueling, but I did it. I get my results in 6 weeks. It took so much out of me, but starting to feel better. I had migraines all last week. I will keep an eye on them and my left ear. I need to go get checked out but need to make the time! That's awesome about your migraines! that's how it was for me as well, but they are returning. Thanks for asking. Take care.
Still going strong....still feeling very well after 33 months post valve replacement! The song that comes to mind regarding how I feel today for myself and ...Read more
Still going strong....still feeling very well after 33 months post valve replacement! The song that comes to mind regarding how I feel today for myself and for all of you who have shared your journey is "Rise Up!"
And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
And I'll rise up
High like the waves
I'll rise up
In spite of the ache
I'll rise up
And I'll do it a thousands times again
All we need, all we need is hope
And for that we have each other
And for that we have each other
We will rise
We will rise...... I know we will. We will do it every day in our trauma, our pain, and our fear! We have the strength and the courage to Rise Up! Thinking of all of you on my Birthday......I wish you all the best with your heart journeys! I feel so grateful to be 66 years old today!
Craig Irving Wishing you a happy birthday, and many, many more. 3 weeks out for myself, and I'm not feeling so gre ... Read more
Craig Irving Wishing you a happy birthday, and many, many more. 3 weeks out for myself, and I'm not feeling so great yet, but I'm hoping I'll feel better soon. You have a great attitude!
Barbara Wood Happy belated Birthday wishes Lilly!!
Lilly Black Thank you so much! I surpassed the age of many of my family members even post OHS! It's been a challe ... Read more
Lilly Black Thank you so much! I surpassed the age of many of my family members even post OHS! It's been a challenging fight but I still have a lot of fight in me....hope you do too! My son once told me "don't ever give up, mom....you taught me that". I'm so glad he listened πβ€οΈβοΈTake good care!
I worry about antibiotics effectiveness and resistance. Been taking them for 10 yrs for dental visits, injuries and procedures .....mostly cephalex. Others ...Read more
I worry about antibiotics effectiveness and resistance. Been taking them for 10 yrs for dental visits, injuries and procedures .....mostly cephalex. Others have made me break out in hives but so far, so good! I would like to hear about your experience and what you've learned. Is there any thing that can be done to prevent resistance? π€
Mark Hall I have the same uneasiness about taking antibiotics. Resistance varies with individuals, but it takes ... Read more
Mark Hall I have the same uneasiness about taking antibiotics. Resistance varies with individuals, but it takes a really weakened immune system + a really nasty infection to = reduced effectiveness. Keeping yourself in the best shape nutritionally, and making sure you rest well go a long way. I have to think my way through what I do, especially if there is risk of injury. Avoidance goes the rest of the way sometimes. If someone at work is sick (which, if they were respectful of others, they would take a sick day...), politely managing to not be in close proximity to them or make contact is smart. But, I'm not telling you anything new. Just be proactive.
Lilly Black Thanks, Mark......other than my heart, I'm quite healthy and am proactive. Thank you for your opinion ... Read more
Lilly Black Thanks, Mark......other than my heart, I'm quite healthy and am proactive. Thank you for your opinion. And of course, will discuss with my doctor. Take care.
Joan Davenport I only take an antibiotic for dental procedures and can only have azithromycin because I am subject ... Read more
Joan Davenport I only take an antibiotic for dental procedures and can only have azithromycin because I am subject to gastric bleeds......
Although my decision was to spare my valve, I don't regret it because I was not a good candidate for a bio prosthetic valve at that time. The downside was that I knew eventually I will need a second open heart surgery to replace my heart valve. Luckily everything turned out fine and I'm doing quite well today!
It's hard to believe that it was 17 years ago when I learned about my BAV! I'm 72, still quite active and so far haven't had any complications due to the 2 heart surgeries! I'm so grateful!
For those of you who are facing heart surgery, know that there's hope. With great surgeons and technology that continues to progress, we see much more success rates and recovery! I wish you all the best! If I can do it β¦so can you! Be wellβ¦you got this !