Hi everyone, I am hoping to connect with anyone that lives an active lifestyle and has the On-X heart valve. My surgeon explained that a lower dose of blood thinner (1-1.5) is possible with the On-X valve. My assumption is that it would be less dangerous should I suffer a head injury etc. Is anyone on blood thinners and doing active, possibly dangerous stuff?
I am leaning toward a tissue valve because I surf, mountain bike and play soccer. The downside is that I would need the tissue valve replaced in 8-12 years and would also need open heart surgery again sometime during my life.
I was born with a bicuspid aortic valve. In the last couple of years, the regurgitation has increased and my heart is enlarging. There are no other heart issues. I am having surgery next week. Any insights would be much appreciated.
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Twentysomething
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Hello, my husband is a lot older than you at 57 but he had an AVR last year. He chose mechanical because he doesn’t want surgery again, despite having to have Warfarin. He rides his motorbikes, on and off road, but not so intensely. He has stopped waterski-ing because he has Dilated Cardiomyopathy. Otherwise I think he’d still be out on the water. His surgeon said no motor biking because of the risk of a bleed on Warfarin if he had an accident but his GP said he sees plenty of patients who motorcycle on anticoagulants. It’s all about understanding the pros and cons and what you can live with most comfortably.
The BHF nurses are really helpful and they may be able to suggest what questions to ask the surgeon to help you make your decision. Or your GP may be able to say what they see people doing in real life.
Thank you so much for your reply. That is good insight. I am very happy your husband continues to motorbike, and that people are taking Wayfairn without living in a bubble. Good luck to you both, and God Bless.
Hello and welcome to the forum! There has been a lot said recently about the Edwards INSPIRIS RESILIA Aortic Valve. This is a tissue valve with a predicted lifespan of 20 - 25 years. Obviously I do not know if it is an option or even available to you.
My personal thoughts are a tissue valve is the best for your age and lifestyle. When this needs replacing (hopefully 15+ years) go mechanical to try and avoid further surgery in the later years. An unknown is what advances will be made in those years. Good luck!
Thank you Michael. Just checked and the surgeon can use the Edwards INSPIRIS RESILIA Aortic Valve. It's not as common in the U.S., but it is available and he is willing to use it. I am leaning very heavily toward a tissue valve and will dive deeper into the Edwards IR valve. Love that it does not calcify as quickly and is designed for future valve in valve replacement. Many thanks, Hunter
Hi.
You will get different views in this. No right or wrong. It is a very personal choice. The choice you make will be right for you!
I was 46 when I had aortic and mitral values replaced and ring around my tricuspid after endocarditis. I used to Crossfit, weightlift, ski and mountain bike. My surgeon advised mechanical. Open heart surgery is a big operation and limiting the number of times you have to go through it took priorty for me. I have reduced my moutaining biking from all-mountain to careful cross country; but do still Crossfit and our yearly skiing holiday. Warfarin takes a bit if effort, but home testing makes it easier.
Good luck. Try not to get stressed with the speed of recovery, again it is different for everyone.
Thank you Jon. Knowing that I'll have to have open heart surgery again if I go with tissue valve is weighing heavily on me too. That's why I was hoping someone has experience with the On-X mechanical valve that requires lower levels of blood thinner. I have not really even considered the recovery much, but will not stress about it now and will take the time I need. All the best, Hunter
Hi. Can i ask do u have any symptoms of bicuspid aortic valve. Im 22 years old and have been feeling really ill lately. I find it difficult walking and going out. I only just found out that MAY have bicuapid aortic valve after doing echocardiram. I quite worried about it
I’ve got a bicuspid aortic valve but it didn’t show up on the echocardiograms I had. It showed up on my TOE scan. Could you have one of those done? You have to have a small camera down your throat, but they give you lots of sedation etc so it’s not too painful or scary.
I will be seeing the cardiologist about it. Bt my doctor did say i will probably have a transesophageal echocardiogram. When did u find out u had a bicuspid aortic valve. And did u need an operation
Yes, I think you’ll know for sure after that procedure. Good luck. I’m 44 and only found out a few weeks ago. They did the scans because I came down with a horrible heart infection called endocarditis, and they needed to see how much it had damaged my valves. They weren’t really expecting to find a bicuspid valve, but they said it had made me vulnerable to the infection. I’ve often had shortness of breath, fatigue and occasional mild chest pains throughout my life, but doctors always said it was anxiety or depression. I think my valve was getting weaker before the infection, and it’s badly damaged now. I’m having open heart surgery to replace it on Friday, but if yours needs replacing, you might be able to have a less invasive procedure, as you haven’t had endocarditis.
No contest mechanical every time, had mine in 2005 brilliant. Had I gone for tissue I would have already had to go through the whole operation again to have it replaced, Who would want to do that. Yes you have to go on blood thinners not a problem. My surgeon said for me to have a tissue valve would be a ridiculous thing to do, at such a young age I was 48 at the time.
Had my Aortic Valve replaced in December 2018, i was 39. I have the On-X mechanical valve. My INR is to be between 1.5 and 2.0. Warfarin is a bit of a pain in the sense you have to watch what you eat and drink. I was told to be careful of knocking my head and even heading a football was a no no. On the plus side I feel good, I am getting fitter as time goes on, I do have my down days though. Good thing is hopefully this is for life and wont need to have it replaced as don't fancy the surgery again!!!
Thank you Stevo. Hard to give up headers, but probably better than open heart surgery again. I'm happy you're feeling good and hoping your On-X lasts a lifetime.
I was in your situation some years back now; bicuspid aortic valve, heart monitored annually. As the years wore on eventually the breathlessness and heart enlargement indicated that it was time to have my aortic valve replaced.
That was 2005 and I was 54 at the time. My consultant and I discussed mechanical versus tissue valves and I decided to go mechanical. As to why, my reasoning was, why put myself in the position where I would almost certainly need to have my chest unzipped at least one more time and hopefully, because of longevity, two or more times? With major operations it’s often the recovery from the general anaesthetic that is one of the major risks, so let’s avoid it.
That brings us to the Warfarin issue. I was and am still not obsessively fitness oriented but at the same time I’m not inactive either. My GP immediately said drink two glasses of red wine a day since Warfarin and thus your INR gets upset if your alcohol level leaps up and down. I know this is probably controversial advice these days but that’s what he said to me. He also said take precautions to protect your head from blows, in my case wear a cycle helmet when cycling.
Now you can dismiss my comments as being not quite relevant to you because I’m not as active or young. All I can say is that to begin with I was cautious. However these days I check and manage my own INR in conjunction with informing the Warfarin control team at my GP’s surgery.... when I remember! I don’t and have never curtailed my activity because I’m on Warfarin, I just ignore it. I’ve never had an episode of any sort. I don’t seem to either bleed profusely or bruise easily and I eat whatever I please.
A couple of years back I had to have an emergency abdominal operation. I don’t know what extra precautions they took to control bleeding but it was not an issue. In any case you can crash your INR by ingesting lots of vitamin K, i.e. spinach with olive oil, brussel sprouts, kale, etc. Of course one needs to be careful and keep a close eye on INR.
Having your blood thinned also has a protective side to it in that I was diagnosed with Atrial Fibrillation some years back and that increases the risk of stroke. Ordinarily they would prescribe a blood thinner but I was already on Warfarin so no extra precautions were necessary.
I perhaps ought to mention that there is, I am told, some research data that suggests that there is a link between having a bicuspid valve and thoracic aortic aneurysms, so one should be monitored for this. I wasn’t I have to say, so it may be recent research I guess.
Lastly, as you have a bicuspid valve, you will need to discuss with your dentist if you need a profilatic antibiotic prior to dental surgery.
I hope the above helps. Personally I think there is a lot of scaremongering around this issue but it’s wise to err on the side of caution even though.
Hi, I had to make the choice in March at 48 due to aortic bicuspid valve. I am very active sports wise and also a worrier so was concerned about the warfarin. My Dad has been on Warfarin for 30 years and, maybe he has been unlucky, but it has affected his healthy quite adversely. Both my surgeon and cardiologist were definitely pushing me towards mechanical but supportive of the argument pro tissue. They said neither decision was the wrong one but that made it very hard for me to decide. I got a second opinion from another cardiologist who, whilst being clinically pro-mechanical due to my age, said that whatever I felt in my heart was the right decision and to trust in it and not look back. Some others on this site said the same which really resonated. He said I knew deep down and one morning I woke up and knew it was going to have to be tissue for me. I'm fully aware of the likelihood of resurgery but I was worried about the ticking noise and I didn't want to be on warfarin for the rest of my life as I think everytime I bumped myself ( I am clumsy) and wanted a drink I'd worry. I had the Inspiris Resilia valve at the end of March (a valve I was unaware of thanks to some great advice from here) and, for me, I am happy with my decision. If I have to have surgery again even in 5 years, so be it.I live in hope my valve may have a much longer life-span and many advances made have been made with TAVI etc by then. I was lucky with the operation and was out within 4 days. It wasn't too bad at all and I am already back on the treadmill. So whilst not ideal, if I need the op again, I'm not too daunted by it. Good luck with your decision but remember whatever you choose will be the right one. I found making the decision far harder than the surgery or recovery!
What about the new Edwards extended life tissue valve which may last 30 years- without the need to take any blood thinners- sounds a good possibility, check it out. Ron
Yes, the Edwards valve is great bit of information that I learned about from this forum. UIt is not as well known in California, but my surgeon says I can have it if I want. Thank you for your support.
Also check out Vitamin K2 with menaquin, current research is looking into possibility it may reduce or even reverse calcification- Nottapharma of Norway (I think that is right), good luck
You probably know but for the benefit of others this is called the Ross procedure. It has fallen out if favour but as with yourself has excellent results in mainly younger people (under 40). Hunter, if you think it is worth considering you need to find a surgeon skilled in the procedure as it is complex but can yield good results.
Hey Twentysomething. I've no idea about that valve specifically but just to say I went for an Edwards Inspiris tissue valve when I had my AVR in December. It seems great so far but obviously it's an open question as to how long it lasts! But the docs were saying the predictions were that it could last as long as 25 years? Guess we'll find out.. But good luck whatever option you go for.
Thank you yes. I've been very lucky in that I had and have had very few complications. So yes feel very much back to "normal" (mostly!) and working now on getting fit (or more probably just fitter!) for the first time in my life as I was diagnosed with a bicuspid valve as a child. Good luck with whatever you decide. There is no right or wrong decision - there are genuine pros and cons to both - but the main thing is just to own and not dwell on or regret what route you choose. If you've chosen it, it's the "right" choice! At least for you. What kind of swung me (and I was leaning towards tissue anyway) was the surgeon saying that you can never of course guarantee that you'll never need a second operation, even with a mechanical valve, even if the odds are you won't. So stacking that on top of everything else really swayed me to choosing tissue and currently very much feel that, for me at least, I made the right choice. Good luck again. Nic x
Hi, I too was born with biscupid aortic stenosis, I had my valve replacement when I was 28 (7yrs ago) I chose the tissue valve due to wanting a family but if I didn’t want a family I would still have chosen tissue valve , I wouldn’t want mechanical due to warfarin etc being so young. You sound like ur very active and I don’t know I’ve always associated any slight knock on warfarin and you could be in big trouble, not sure if that’s true or not but that was my understanding. Technology is constantly evolving and who’s to say your next surgery wouldn’t be tavi. Who knows! Good luck with your surgery its not as bad as you would think physically. More emotionally I would say. Have good support network and take all the pain relief you can get
Just a thought, there is research, animal testing stage, at Cambridge University into a totally new approach. Synthetic compounds are injection moulded to a standard profile. Lifetime of valve seems to be in excess of tissue valves and it is warfarin free as there is no turbulence.
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