At age 49, I had a 19mm St Judes mechanical aortic valve placed in 2012 due to severe stenosis and cardiac insufficiency. Born with a congenital bicuspid valve, ...Read more
At age 49, I had a 19mm St Judes mechanical aortic valve placed in 2012 due to severe stenosis and cardiac insufficiency. Born with a congenital bicuspid valve, I was followed my whole life because the murmur was very significant from birth. But I was in complete shock when they told me it was time to replace it. At the time, the gradients over the valve were very high (peak 86), so the words "high risk of sudden death incident" were spoken by every doctor I consulted (I'm sure so many of you can relate to all of this.) I was a very active person my whole life. A runner, hot vinyasa flow yoga enthusiast, rock climber, skier, business owner, wife, mom, world traveller - with lots of energy. Ok, so I was out of breath more that usual, that is true. And maybe on a few occasions I had to stop running and lay down because of a strange pain in my chest. And yes, I had been sleeping practically sitting up for maybe 10 months because I would wake up in an arrhythmia and occasionally gasping for air. But in my mind, I had found fixes for all of these things...or so I thought. I was only given a matter of weeks to prepare (3 to be exact and it would have been less, but I no way wanted to be in the hospital over Christmas!) I was terrified and didn't really have time to think this through. But I reached out to family and friends for advice and support, and I did my research and travelled to a renowned valve surgeon for the operation.
Unfortunately, post op, I did not experience the "bounce back" recovery that most every person does. The "new lease on life" eluded me. In fact I had a fever for 6 weeks, and one lung would not inflate. I experienced dramatic episodes of fainting, near fainting, 2 seizures, a TIA and periodic paralysis episodes all of which landed me in emergency rooms at least a dozen times over the past few years and the Mayo clinic 4 separate times for a week each time, in search of answers. I had never had any other health issues before the surgery, so doctors were baffled by the situation and so was I. A number of strange sounding, rare and some not so rare possible diagnoses were soon attached to my medical record and following me around like a the black cloud over Charlie Brown's friend Pigpen. Unfortunately, I had to come to a complete exercise standstill, as the one thing that seemed to exacerbate health issues, was any kind of exercise or activity...and now I have made the excuse for myself that I am just older and wiser and my slow moving is a form of walking meditation:-). And the fact that I cannot lift my left arm up for more than 10 seconds without causing an irregular pounding heart beat to occur? I had diagnosed myself with a hiatal hernia....never imagining it could have anything to do with my heart, because we fixed that right?
So now, taking my hands away from my cringing face, I am having to look toward acceptance of a new diagnosis. One that was with me all this time, yet eluded my awareness. Maybe the first time I heard the words, they went over my head..maybe the second and third time too. But there they are, on every echocardiogram and every doctors thoughtful report...I have been diagnosed with patient-prothesis mismatch. I had never heard of such a thing and really didn't want to believe it was true. And who knew that you should discuss the size of the valve that is appropriate for your body with your surgeon? I don't think it even occurred to me there were different sizes, or how they determined the appropriate size. I was also not offered a choice about mechanical vs bioprosthetic. Both surgeons I consulted were only willing to place a mechanical valve due to my age.
So now, my gradients over the valve are high again and my indexed EOA is very low (this is what indicates a mismatch, a valve that is too small for my body, not able to give me what I needed after all.) And I have been told once again....it's time. Once again the words "high..risk..sudden...death...incident.." are a part of every conversation with the 3 cardiologists and one surgeon I have consulted so far. I need to schedule surgery to have the mechanical prothesis removed and have a root enlargement done which is what should have happened in the first place (again,who knew to ask?), and have a larger valve placed in my heart . The current one is 2-3 sizes to small for me. Needless to say, I am not very happy about it. I have diligently managed my INR for 6 years, even though given the choice I would have chosen a bioprosthetic valve the first time around in order to not be on Warfarin and now? I most likely would be having TVAR to correct this. But I will be having, as I like to call it, the "full enchilada" again and this one will be longer and more difficult, and the recovery time obviously different than the last time.
I really did not understand any of this back before my surgery and of course hindsight is 20/20. The surgeon indicated that this would be a permanent placement, unless I was planning on living to be a centenarian :-) It is very difficult for me to accept my current situation. I guess the light at the end of the tunnel for me is that maybe the second time will bring me the "bounce back" I never got the first time. I am still in denial mentally, but moving forward meeting with surgeons and sweeping out my life to make way for something that is at least a familiar dance for me at this point. I am just wondering if there is anyone on here in my same situation. I feel pretty alone and isolated with this one. Before my first surgery, I read Adam's book twice in two weeks! His advice was priceless and since I didn't personally know anyone else who had this, it filled a hole for me at the time. Advice, comfort. Since then I have been able to offer support to friends of friends and relatives of friends having valve surgery. But I'm hopeful I can find someone who has been through what I am going through now. Please do not be discouraged by my story. It is a rare outcome from what I have been told. And at least I know what to expect now. The last one was no walk in the park for me. But I am telling myself it will be different this time. And I am starting to believe it!
Rita Savelis Oh, Karen, I'm so sorry to hear what you have been through. The sizing of a valve replacement is one ... Read more
Rita Savelis Oh, Karen, I'm so sorry to hear what you have been through. The sizing of a valve replacement is one of the most important parts of pre surgery as well as during surgery, and it's terrible that somehow this went wrong in your situation.
I do hope that once you get the correct size valve, you will experience the bounce back that you expected the first time around.
Take care.
Marie Myers I, too, am sorry you had to endure all that you have been through. I hope your next surgery goes well ... Read more
Marie Myers I, too, am sorry you had to endure all that you have been through. I hope your next surgery goes well, and that you have an uneventful recovery this time.
Barbara Wood What a tough journey you've had... your story is just chilling! I hope this time around everything wo ... Read more
Barbara Wood What a tough journey you've had... your story is just chilling! I hope this time around everything works out in your favor...take & best wishes
Rose Madura Hi Karen, It is terrible what you've had to endure. I thought I had it bad. It's very unfortunate. ... Read more
Rose Madura Hi Karen, It is terrible what you've had to endure. I thought I had it bad. It's very unfortunate. I hope all goes well with this next surgery. You've had a tough pill to swallow. I did discuss size with the surgeon. I wanted the Edwards Magna Ease valve but he said he couldn't do the "ease" valve due to the size. I'm sure you will have a long list of questions for the doctor. Also, you should be able to choose your valve - whether mechanical or not. Sounds like you have your mind wrapped around everything. I wish you the best. Please keep us posted.
Catie B My heart goes out to you in every way, Karen. I am so sorry they committed such a huge misstep with y ... Read more
Catie B My heart goes out to you in every way, Karen. I am so sorry they committed such a huge misstep with your last surgery! I hope you are able to find an impeccably skilled surgeon who will be able to straighten out the issues and return your active life to you.
Civita Fahey Wow Karen, thats an amazing story.. though you have been through a lot you seem still optimistic and ... Read more
Civita Fahey Wow Karen, thats an amazing story.. though you have been through a lot you seem still optimistic and I pray that you're nexts surgery have a far better outcome than the first.. Keep the faith and all will be well.
Lilly Black I have heard of prosthesis mismatch for other types of body part replacements. I'm so sorry Karen! I ... Read more
Lilly Black I have heard of prosthesis mismatch for other types of body part replacements. I'm so sorry Karen! I believe in learning about other people's experiences and sharing those experiences for the greater good. Education is key. The second time around was better for me. Still difficult but a lot better! Credits go to my great surgeon. Wishing you a great outcome! Keep us posted ✌️💝
I do hope that once you get the correct size valve, you will experience the bounce back that you expected the first time around.
Take care.