Upcoming second OHS, having trouble deciding which valve this time!

[cewilk]

My first OHS was in July 2012 at 24 years old. I chose the Ross Procedure hoping I'd get longer out of it than a tissue and also not wanting to get medically discharged from the military for being on Coumadin if I chose the mechanical. After my two echos this year, it appears that my Ross Procedure has failed and I still have severe aortic regurgitation and a severly enlarged left ventricle.

I am now 26 years old and I met with my new prospective surgeon this week and he has confirmed that I do need surgery and there's no need to delay it too long seeing as this is something that obviously won't get better with time. So now I am back to where I was in 2012, except the Ross is no longer an option. So this time it's either mechanical or tissue.

By choosing a mechanical, I understand that it is designed to last a lifetime. I am concerned that at age 26, a mechanical still may not last me throughout the duration of my entire life. With being on Coumadin, I will have to leave my job in the Marines and also likely rule out other professions of interest due to Coumadin therapy. So there will be some significant occupational and lifestyle changes that I'd have to make, but at this point I just want to choose what will most likely last the longest without a third OHS.

The only reason why I am even considering a tissue valve at this point is the recent developments of the transcathetar aortic valve replacements (TAVR). I was informed by the physician assitant that if I chose a tissue valve and the time came to replace it, I would likely be a candidate to receive the TAVR. If I was not deemed a high risk patient for TAVR, then I would have gotten this tissue for nothing in hopes of avoiding another OHS. But even if considerd a high risk patient, I would be looking at a TAVR procedure everytime the replacement valve failed for the rest of my life.

I hate the idea of having to give up being in the Marines due to Coumadin, but at this point I want to make the choice that's best for my long term health and avoid a third OHS. I also don't want to gamble too much by choosing the tissue and expect to be considered a high risk patient for the TAVR and then be denied. I know this is ultimatley something I have to decide on my own, but I just wanted to hear some opinions from other people and maybe receive some insight and advice. Thanks for reading!

 

[dornole]

I'm wondering - let's say you want to stay in. How many years do you think you'd want before you would leave the Marines / is there a point where you get the retirement benefits, and how far out is that? Would a tissue valve get you to that point? For example age 40, that would be 14 years from now, would a tissue valve last that long in someone as young as you are? or would you need 2 tissue valves even to get there and then a mechanical after you leave?

Also, are you 100% certain you can't be on Coumadin? Would it matter if you switched to a different job class or even branch of the military, and if so would that be appealing to you? Just asking because it's super important you are operating with the right info. I really want you to have it both ways. : )

It seems like if you want the greatest likelihood of this being your last surgery and that ends up being the top priority, mechanical is the way to go given your age . . . but you get to choose if you want to accept the risk of more OHS and/or several TAVRs in order to keep a job and community that's important to you. . . or go mechanical and move on to new horizons that might also be amazing.

 

[scott.eitman]

Wow this must be a tough decision.! Two years out with a bio-prosthetic and in need of a replacement. I thought it was tough 12 years out. For me it was about not wanting another surgery. For you, I understand the desire not to be on coumadin.

If it was me making the decision today, I would have trouble choosing a mechanical with the TVAT out there. However, you need to consider the fact that you have a loooong way to go until you are considered too high risk to have surgery. Lets be honest, until further testing is done and approved, you will have trouble qualifying for high-risk form many many years. It is my understanding that testing has just begun of a slightly lower risk patient. I am making the assumption that as a Marine, you are in pretty good shape and will remain that way for the foreseeable future.

Any decision you make is the best for you at the time you make it.

Stay Well
Scott

 

[Broncorod]

Hiya cwilk. Sorry you're having to go through this again. I can tell that you are really struggling with this decision because of the military. One would deduct, that you are a very physically active person. And one would assume that the reason you would be medically discharged, is because of the risk of major injury, while on coumadin.
My advice to you would be to make the decision based on your lifestyle, and not so much your job, because even if you went tissue, and remained in the military, you have no idea what fate has to offer in your future.
I was considered too young to get a tissue valve at the age of 49. But I chose it because of the Coumadin factor and my active lifestyle. I would rather have another surgery later in life, than go through life on coumadin. The other reason I chose tissue, is that technology in cardiology is constantly progressing, and my hope is that by the time i need another procedure, they will have a less invasive, and more permanent solution for valve replacement without the blood thinners.
Good luck with your decision and procedure. We will all be praying for you.
Bronco

 

[clay_from_nj]

I would be looking at a TAVR procedure everytime the replacement valve failed for the rest of my life.

I don't think that is quite so. I'm quite certain there is a limit to how far you can "nest" one TAVR valve inside another inside another, and I would bet that it is a very small number. Can you even put one TAVR inside another? I would guess that if one of those wears out, the surgery to remove and replace it would be pretty complicated.

 

[dick0236]

By choosing a mechanical, I understand that it is designed to last a lifetime. I am concerned that at age 26, a mechanical still may not last me throughout the duration of my entire life. With being on Coumadin, I will have to leave my job in the Marines and also likely rule out other professions of interest due to Coumadin therapy. So there will be some significant occupational and lifestyle changes that I'd have to make, but at this point I just want to choose what will most likely last the longest without a third OHS.

!

At age 31 I got a mechanical valve and I didn't expect it to last a lifetime and hoped for about twenty years.......now I will soon be 79 on THAT valve, so I guess it may last the duration. Luck has obviously played a part in my valve lasting this long, but mechanical valves MAY last and that can't be said for any of the other options. As far as limiting occupational and lifestyle options, I felt the same way.....and over time I found that my limits where self-imposed and unnecessary. There are many on this forum that had had the surgery and continue to work in hazardous jobs, ie firefighters, police etc. Are you certain that your Marine Corp career will be affected due to warfarin?....I'll bet that a bunch of marines take warfarin for reasons other than valve surgery. If I have any regrets, it is that I listened to people that told me what I couldn't, or shouldn't, do.

 

[pellicle]

With your age and that you are on your 2nd op it you get a tissue you will need a third op in under 15 years. Is that what you want?

There are many and compounding complication possibilities with each successive operation. For instance there is a nerve nexus near the aortic valve, that can be damaged during reop surgery leaving you on a pacemaker for life. Damage is easier due to scar tissue obscuring the surgeons vision.

Then there is infections ...

15 years sounds a long time, I had my 3rd at 50, you would be having it at 40.


You have already seen that operations may not live up to the promises. So you should now be aware that its not always like the colour brochure printed by the makers of valves.


Some readings on tavi

https://cartagenasurgery.wordpress.c...-tavi-and-tav/

http://www.medscape.com/viewarticle/790917

PS three years after my last surgery (2011) I am still on antibiotics for the infection I got during the surgery. In my last meeting with the infection specialist he observed that we have no way of knowing if my infection is gone or if it is merely being suppressed sufficiently by the antibiotics. What this means is that we (him and I) have decided is that to go off the antibiotics at this point would risk the infection re-establishing a hold. Since it is behind the sternum it is likely to infect the valve and sock around the aorta. That would essentially kill me.

So, to quote from my Uncle Clint ... so,tell me, are you feeling lucky?

 

[neil]

hiya, welcome aboard, you can make arguments for both, bottom line after all the ******** is have tissue and not be on coumadin or have mech and it will last longer, it really is a personnel choice, one am sure we wouldnt like to make ,

 

[Northernlights]

Clay is right , you can only put a Tavi inside a conventional tissue valve once. Even then the new valve will be constrained by the stent of the old one (it only really works well inside conventional valves of 25 mm or larger, with smaller ones the gradients are a lot higher - though with aortic regurgitation rather than stenosis yours is probably large enough). And mechanical valves have better hemodynamics generally than stented tissue valves and you will want good hemodynamics for your ventricle to recover.
I agree mechanical is the wiser choice in your circumstances - definitely the best chance of avoiding further surgeries, as at 26 you would be likely to need more than 2 tissue valves in the future.

 

[Agian]

Also, are you 100% certain you can't be on Coumadin? Would it matter if you switched to a different job class or even branch of the military,

Different country, but yeah. You've got nothing to lose by asking brah.

 

[cewilk]

Also, are you 100% certain you can't be on Coumadin? Would it matter if you switched to a different job class or even branch of the military, and if so would that be appealing to you? Just asking because it's super important you are operating with the right info. I really want you to have it both ways. : )

In the Marine Corps all of our medical services are provided by the Navy. My cardiologist is a navy officer and I also have a naval medical officer assigned to my unit. Both have confirmed that being on lifelong anti-coagulants is an automatic medical discharge. There is a process called a physical evaluation board (PEB) which is a panel of doctors that review medical documents to determine a service member's ability to continue their duties. There is a small chance I could be offered to remain in the Marine Corps but on a permanent limited duty status, which I would decline due to being permanently non-deployable, which to me is similar to being on the football team but permanent practice squad. Essentially, my opportunities would be severely limited due to being considered a higher medical liability because of anti-coagulants. I also have no desire serving in a different branch of the military so if I choose the mechanical valve (which is what I am leaning towards) then I will have to redirect my goals and pursue other career options, which I have begun to come to terms with.

 

[cewilk]

At age 31 I got a mechanical valve and I didn't expect it to last a lifetime and hoped for about twenty years.......now I will soon be 79 on THAT valve, so I guess it may last the duration. Luck has obviously played a part in my valve lasting this long, but mechanical valves MAY last and that can't be said for any of the other options. As far as limiting occupational and lifestyle options, I felt the same way.....and over time I found that my limits where self-imposed and unnecessary. There are many on this forum that had had the surgery and continue to work in hazardous jobs, ie firefighters, police etc. Are you certain that your Marine Corp career will be affected due to warfarin?....I'll bet that a bunch of marines take warfarin for reasons other than valve surgery. If I have any regrets, it is that I listened to people that told me what I couldn't, or shouldn't, do.

That's amazing your mech valve has lasted so long. Definitely great to hear. After reading through the forums it seems like anti-coagulant therapy really isn't that terrible and it doesn't really restrict people from doing most of the things they loved doing anyway.

 

[cewilk]

Clay is right , you can only put a Tavi inside a conventional tissue valve once. Even then the new valve will be constrained by the stent of the old one (it only really works well inside conventional valves of 25 mm or larger, with smaller ones the gradients are a lot higher - though with aortic regurgitation rather than stenosis yours is probably large enough). And mechanical valves have better hemodynamics generally than stented tissue valves and you will want good hemodynamics for your ventricle to recover.
I agree mechanical is the wiser choice in your circumstances - definitely the best chance of avoiding further surgeries, as at 26 you would be likely to need more than 2 tissue valves in the future.

Clay, Pellicle, Northern Lights:
Thanks for the additional info about TAVR. Definitely some major things to think about. I will asking many more questions about this next week when I see the surgeon again.

 

[pellicle]

Hi

...so if I choose the mechanical valve (which is what I am leaning towards) then I will have to redirect my goals and pursue other career options, which I have begun to come to terms with.

pardon me for "presuming" but what you say sounds like you are underway on the path to the spiritual healing which we all must undergo when we are confronted with these sorts of changes in life. To me this is the most important step.

I have no idea about your path, but I can say I've had a few 'life changing' events in the last few years and I too am working towards redirecting my own life (but yet still unclearly) after my changes.

I listened to this interview by Richard Maurovic who is an Australian stockman who became a quadriplegic at a young age. His story was to me quite inspirational while I was in my darkest times. Its interesting to listen to his words and that he now is doing something in his life which he enjoys and which he would never have undertaken had he not had his accident.

http://www.abc.net.au/classic/conten...30/4015556.htm
and the podcast link is here: http://mpegmedia.abc.net.au/classic/...2014-05-30.mp3
the interview format includes some classical music which you may want to skip (or not).


Best wishes

 

[neo]

cewilk,

I know you are facing a tough decision here. Unfortunately, there is no guaranteed perfect decision, only the best decision for your specific situation. I feel like I share a similar story to you. In 1999, I was 21, and went with a Ross Procedure. That valve lasted me 10 years and started to stretch out (dilate) over time. It became leaky. In 2010, I decided to try and get it repaired. I went to a great surgeon and had some good initial results. Unfortunately, the valve was already too worn out, so started to leak again.

In 2013 (34 years old), I was faced with my 3rd surgery. I knew I would need to replace it this time, and my options were mechanical or one of the 3rd generation bio-valves. I was leaning toward mechanical in the beginning. I knew I didn't want to go through another surgery anytime soon, especially now that I have kids. Mechanical seemed like a solid choice, but not a perfect one. While many people learn to adjust to the cost of monitoring and diet of being on coumadin, and noise of mechanical valves, that doesn't mean they'll last forever. It seems likely they will last a long time, but they are not immune to pannus or infection.

RIght now, 3rd generation biological valves are being used frequently. My choice ultimately came down to the St. Jude Trifecta valve and the Edwards Magna Ease valve. If you choose biologic, the valve selected will most likely depend on whatever valve your hospital is contracted to use. Both valves are excellent, and have modern features that differentiate them from the valves tested in the 80s where most of the current durability and longevity data comes from.

One of the biggest reasons I chose biologic, in our similar situation of having had a Ross "Switch" Procedure, is that my other valve (pulmonary homograft) may need to be replaced one day as well. It's been 15 years since my Ross and while my pulmonary (where the ross aorta came from) is still functioning well, there is a mild gradient. That may never get worse, but it possibly could. The point is, no matter what we do, we may still have to face another surgery again someday.

The good news is, in 2014, there have been HUGE leaps in TAVI/TAVR technology and product approvals. Do any research you can on valve-in-valve procedures. This year, we should get results on some TAVR studies done in moderate risk patients. It is very likely that TAVR will be the procedure of choice in a few years, so getting a perfectly circular biological valve may make a future valve-in-valve procedure even easier to do than on a native valve.

Above all, choose an experienced surgeon to do your redo. I would highly recommend seeking out the best possible surgeon and flying there to have it done. Good luck.

 

[Superman]

I think surgeons, cardiologists, and PA's are all being very irresponsible and opening themselves up to future liability when all those patients they promised a TAVR face their current tissue valves wearing out.

If I'm a lawyer, I'm watching this and building my class action suit ready to file.

To me, your biggest choice here is to weight your career options. Pretty black and white. If you want to stay in your current career, go tissue. If you have options outside of the military and want to minimize potential re-ops, then go mechanical. Personally, I would not be comfortable making a decision based on options that are not available. I have a friend who did this and he's already six years into his tissue valve. Maybe his tissue valve lasts a while, maybe it doesn't. But as of right now, we don't appear any closer to a TAVR option than when he first got the valve. This means he'll be facing a re-op if that valve starts to deteriorate as things currently stand.

Your re-op risk with mechanical generally has little to do with valve issues. Typically it's due to scar tissue, or sutures coming loose, or an aneurysm. I say typically, in that IF you face a re-op with a mechanical valve, those are the most likely reasons. I do not know the percentage of mechanical valve recipients that needed a 2nd OHS. I did, and it was due to an ascending aortic aneurysm. My first valve was still fine.

 

[Superman]

Just for addition information - I was 17 at my first operation and 36 at my second. I'm just over 5 years in on my second. Went mechanical both times and have been on coumadin for the last 24 years.

 

[ottagal]

cewilk,
I don't have anything to add, but wanted to send you my very best wishes. I hope that once you arrive at your decision, make peace with it and don't look back.
Thinking of you,

 

[big_L]

I too believe that the surgeons are really hard to trust on this issue. They tend to view surgery as 'no big deal', as it's just another day in the office for them. Many of them do not know much about warfarin therapy. I was told the same thing 'TAVR will be an option for you later, if you choose tissue". He didn't really know this.

I've found the warfarin to be nothing more than a minor nuisance.

Your decision is one that we've all had to make. Read up, sleep on it, talk about it. Your gut will tell you which is right for you. Make the decision and don't let the doctors talk you out of it. Good Luck!

 

[cewilk]

Thanks everyone for the insight. These responses have helped me come closer to making my decision and feeling confident about it.