Valve choice for 23 yr old active male

[HiMyNameIsDale]

I am scheduled for surgery at Cleveland Clinic on March 27th and I am finding it hard to make a valve choice. I have a bicuspid aortic valve with severe regurgitation and mild stenosis with symptoms due to the regurgitation. I also have a ascending aortic aneurysm at 48mm. The repair of my valve or the mechanical valves with tissue seem like a bad choice because of my youth and the rapid failure rate. I also don't want to have another surgery in five or six years if I can avoid it. The mechanical valve seems to give me the best option due to the potential to last a long time, but the mechanical valve involves coumadin that I will be taking for the rest of my life. Are there any serious problems noticed with taking coumadin? Basically, I need to know if it is better to just take coumadin and potentially avoid another surgery in the near future or get the tissue valves and stay off of coumadin for around 5 to 7 years and then have another surgery. The cardiologists suggest to keep me off of coumadin for as long as possible? Is coumadin really that big of a problem or a problem that is worth avoiding for 5 or 6 or 7 years? Have tissue valves ever lasted 10 to 15 years in young people? I have no idea what to do because I am young and this choice will have a lasting impact on my life whether it is good or bad. Yet, any surgery will be a better choice than none.

 

[dick0236]

Hi Dale. Yours is the $64,000 questions and only you can answer the question for yourself. That said, I had a mechanical valve implanted when I was only 31....am now 76, have needed no further OHS and have been on warfarin/coumadin for almost 45 years. My only problem, a stroke at age 38, was almost certainly my fault due to mismanagement of warfarin. By following a few simple "rules" I have had absolutely no problems, since the 1974 stroke, with the drug and it has seldom interfered with my life or lifestyle. I went thru this surgery once and hope that I'll never need to do it again. There are many threads on this forum that can help you make an "educated choice" as to the right valve for you now, and in the future. Good Luck!!

 

[Sarah_Louise]

Hey Dale,
I'm 18 and already had 5 heart ops and waiting for number 6, My pulmonary valve is a tissue valve and has lasted me 10 years (thats what i'm waiting for to be changed) But you need to remember the aortic valve works "more" than the pulmonary valve.....my aortic valve was able to be repaired untill i was 13 years old, but then it got to the point they couldn't repair, nor stent it, so i had a mechanical valve put in; i had a lot of problems with anti-coagulants, (BUT my docs, heamatologist, cardiologist, & surgeons, all semi/retirired had said they'd NEVER seen anyone in all their time s consultants, have the problems like i did with anti-coagulants) and ended up having emergancy OHS to change my aortic valve back to a tissue one, (thinking behind it, no mechanical valve, no anti coagulation, no clots) My consultant said it should last me 4.5-5 years, but it has only been in since April last year, and already got regurgitation on it, so might not even get that,
Welcome to the boards, if i can help with anything just ask
Love Sarah xxx

 

[tprice54]

Welcome Dale! I moved here from Buffalo (actually Williamsville). I know most people in Buffalo go to Cleveland, and that's a really good place for your surgery. Please read as much as you can here; I think you'll see one thing: the only bad choice is not to have surgery. At your age, certainly a mechanical valve seems a good choice, and don't let anti-coagulation get to you....everyone here who has been on it will tell you it's no big deal. Wish you the best......

 

[neil]

welcome dale as everbody has said which ever you choose is gonna save your life, listen to what your cardio and other experts in the field have to say, there not experts for nothing,

 

[dhudson]

Dale, i haven't had an op yet, am waiting on the tests, probably this year though. but i will opt for mechanical when the time comes. personal choices. Anyway, welcome to the forum, hope to talk with lots. Lots of great advise here, and people who care. Be praying for you.

 

[tobagotwo]

Tough thing to go through at your age. I feel for you. Continue to move forward, and this too will pass.

However, a mechanical valve would be the most sensible choice, in my opinion. A few tissue valves last ten years in young people, but the odds are quite poor.

Plus, you seem to have congenital arterial tissue problems. Sewing and resewing the valves in multiple surgeries may not be the best solution if the tissue begins to become mixomatous (weakens) over time. See if you can get an On-X mechanical (even if they have to sew it to the sleeve used to replace the ascending aorta). I would also look to the surgeon to do as much long-term work as possible on the aorta, with an eye to reducing the number of surgeries you may have to undergo in future for expanding arteries.

Not a fun post, I know. You seem to be handling this well, even if you are panicking (I imagine) on the inside now and again. We all did (or will) before surgery. Be well.

Very best wishes,

 

[Bob in Colorado]

Mechanical

Mechanical

I don't often jump into this kind of forum discussion and when I do it is to echo what others have said about the fact that it is your choice - and truly it is. However at your age I would urge you to give very serious consideration to a mechanical valve. I have had both a tissue and a mechanical valve, and can tell you that I do not want to undergo another open heart surgery. I have been very happy with my On-X valve and Coumadin is very easy for me to manage with home testing and small dose adjustments from time to time.

The results of the On-X studies are also very encouraging, suggesting that there may come a time when a lower dose and INR range is recommended for On-X patients.

Best to you. It will all work out.

Bob

 

[TheGymGuy]

Welcome to the forums Dale. My surgery is same date as yours, so looks like we will be recovering and rehabing at the same time. It'd be great to have a partner in crime and exchange notes in real time.

Biologically, I am about 10 years older than you, physically, well, we might be not that far off My choice was, well my choice is, to go mechanical valve. Which one is really up to you, you can get St Jude (STJ) they have been around forever, or you can go On-X slightly newer and has interesting studies and great marketing team. Whatever you choose be it tissue vs mechanical the decision will most likely lay with risks of repeat surgeries VS risks of coumadin for life. Most people here tell me that coumadine management, esp. with at home monitoring is very much doable, so I would go with that.

Keep us updated with everything. Looking forward to hearing from you soon.

 

[chaconne]

This can be a tough choice.

However, I would encourage you not to be too afraid of Coumadin. I would rather get used to a new norma,l (pill every day, testing every 2-4 weeks, a soft clicking sound, limit contact sports) than to have to stop my life for a few months every decade. I also have the On-X and I hope it's proven to have advantahes at some point in the future.

 

[HiMyNameIsDale]

Thanks to everyone that responded so far with all of the great advice. I appreciate your input and value your opinions since all or almost all of you have dealt with this type of situation. I am leaning towards mechanical valves and it is reassuring to know that living with anti-coagulants is not as bad as it seems. I am still a little nervous about the whole thing, but I feel much better now that I have joined this forum and I have a date for surgery. Everyone on this site is an inspiration to someone in my situation. I will continue to keep everyone updated on my situation and any other questions that I have. I am sure I have more because this is a complicated and stressful event. I am open to any advice or information that anyone has to offer.

 

[TheGymGuy]

Dale,
It might help to talk to someone who has had a surgery on the phone and get their story first hand. I, for example, spoke to JeffF when he was about 10 weeks post-op, his personal recollection has helped me more than I can describe. I also plan to talk to Scott42 soon to get his first hand experience pretty soon.

 

[AgilityDog]

I've had 2 surgeries, 4 years apart, to implant 2 mech valves and repair a third. Would I volunteer for another surgery???? No, thank you.

 

[JeffF]

Dale, Welcome to VR. This is truly a great place to learn and connect with others that are going through the same thing. I received an On-X mechanical valve this past December and have been doing great.

Let me know if you have any questions.

Jeff

 

[yotphix]

I had to make that choice at 39 years of age, and for me it was no contest. They've gotten really good at OHS, but I still don't want to do it more than once. I wanted to answer your question specifically because you emphasized 'active' in your subject line. There doesn't need to be any conflict between 'active' and 'anti-coagulated', unless 'active', to you means boxing or MMA fighting! You'll take on some additional risk in some activities. You'll need to give serious thought to activities in which your head is at elevated risk of getting a knock. That needn't stop you from doing them though. I wear a helmet now on inline skates, and when I'm cycling anywhere but on the beach, for example.

You'll make the choice that is right for you, just don't let fear of coumadin keep you from mechanical if you're inclined that way.

On the topic, a thought has occurred to me before, which is that people who are a couple or more months out from surgery, and wondering about warfarin, should talk to their doctor about trying it out. There are people who don't respond well to it (rarely) and they would know in advance if they could try it to the point of getting stable on it prior to their surgery. There's no real harm in it. Just a thought.

 

[Tom Berning]

Hi Dale,

Welcome to the site. You're in good company. I waffled on valve choice right up to the week before surgery. For me the fear of taking Coumadin became the lessor of the evils and at 12 weeks post-op I can tell you that it's just not that bad. It took me about 6 weeks to stabilize, I don't bruise any easier and what cuts and scrapes I've gotten haven't bled anymore than before. I'd rather make trips to the clinic for INR testing than have another OHS.

Tom

 

[njean]

As others have said, valve choice is personal and ultimately the choice should be yours. That said, however, do not let the fear of having to take anticoagulants deter you from making a wise choice.

I was 24 years old when I had my double-valve implants. That was 37 years ago. Since then, I've had to have the aortic valve switched out with a new mechanical and my mitral valve needs to be switched out too, but that's another story. The important thing, I have been on coumadin all these years, have led an extremely active life, had many other surgeries not related to my heart, and have survived, coumadin and all!

I hope that we have eased some of your concerns and that you will make the right choice for you! Wishing you the very best!

Need to add: I had the aortic mech valve switched out in 2006, so that was 31 years after my initial surgery in 1975....lasted a long time. And the 37 year old mitral valve is still ticking...not as strong but still going, thank God!

 

[sensei Ade]

Hi Dale
Totally get where you are coming from. I had an aortic tissue valve put in 6 years ago and the surgeon at the time said that I was too young to be taking warfarin/coumadin because of bleeding risks etc. He told me to go off and enjoy life and then another replacement will be sorted out as and when. He never told me about the likelihood of tissue valves to fail within a few years for the younger generation, and lo and behold, 5.5 years later the replacement aortic valve sprung a leak and quickly deteriorated from there. I've now got an On-X valve implanted which lasts 100 years + and tolerates low levels of anti-coagulents. Important for me as I have a black belt in karate and play field hockey...! There a big trial going on the US called the PROACT trial where they're testing patients with On-X valves on lower doses of anto-coagulents. So far the results have been very promising. The risk of stroke is also very low with these valves as their design ensures very little blood turbulence as it passes through the valve. All food for thought for you to help you make the right decision for you.

All the best

Sense Ade

I am scheduled for surgery at Cleveland Clinic on March 27th and I am finding it hard to make a valve choice. I have a bicuspid aortic valve with severe regurgitation and mild stenosis with symptoms due to the regurgitation. I also have a ascending aortic aneurysm at 48mm. The repair of my valve or the mechanical valves with tissue seem like a bad choice because of my youth and the rapid failure rate. I also don't want to have another surgery in five or six years if I can avoid it. The mechanical valve seems to give me the best option due to the potential to last a long time, but the mechanical valve involves coumadin that I will be taking for the rest of my life. Are there any serious problems noticed with taking coumadin? Basically, I need to know if it is better to just take coumadin and potentially avoid another surgery in the near future or get the tissue valves and stay off of coumadin for around 5 to 7 years and then have another surgery. The cardiologists suggest to keep me off of coumadin for as long as possible? Is coumadin really that big of a problem or a problem that is worth avoiding for 5 or 6 or 7 years? Have tissue valves ever lasted 10 to 15 years in young people? I have no idea what to do because I am young and this choice will have a lasting impact on my life whether it is good or bad. Yet, any surgery will be a better choice than none.

 

[Greg a]

I am scheduled for surgery at Cleveland Clinic on March 27th and I am finding it hard to make a valve choice. I have a bicuspid aortic valve with severe regurgitation and mild stenosis with symptoms due to the regurgitation. I also have a ascending aortic aneurysm at 48mm. The repair of my valve or the mechanical valves with tissue seem like a bad choice because of my youth and the rapid failure rate. I also don't want to have another surgery in five or six years if I can avoid it. The mechanical valve seems to give me the best option due to the potential to last a long time, but the mechanical valve involves coumadin that I will be taking for the rest of my life. Are there any serious problems noticed with taking coumadin? Basically, I need to know if it is better to just take coumadin and potentially avoid another surgery in the near future or get the tissue valves and stay off of coumadin for around 5 to 7 years and then have another surgery. The cardiologists suggest to keep me off of coumadin for as long as possible? Is coumadin really that big of a problem or a problem that is worth avoiding for 5 or 6 or 7 years? Have tissue valves ever lasted 10 to 15 years in young people? I have no idea what to do because I am young and this choice will have a lasting impact on my life whether it is good or bad. Yet, any surgery will be a better choice than none.

WELCOME
You are on the calendar so you will have all sorts of prayers and positive vibes.......the decision you face is VERY personal and driven by your lifestyle

 

[HiMyNameIsDale]

Hey all,

Thank you for all of your support and help. I think I want to go mechanical because I don't know if I want to go through another open heart surgery so soon. I can at least have better odds of avoiding a re-op with a mechanical valve. Based on what most people have said the coumadin does not seem like the monster that some people make it out to be. It makes me feel better seeing the people on this forum that have been taking coumadin for a long time and have no or had relatively few bumps in the road. But, is it possible to get a mechanical valve replaced with a tissue valve? If my mechanical valve decides to break down when I am 50 or 60 or 70 can I get it replaced with a tissue valve? Has anyone ever done this on this forum or does anyone know someone that has done that?

P.s. Thanks for adding me to the calendar Greg. It feels good to be a part of the family.