Tisse Valves nearing 10 years old and Have o be replaced

[NealR]

Well, its been a while since Ive been on this. I am in my 10th year and have contacted endocarditis and have moderately to severely stenosis in both Aortic and Mitral valves. The endocarditis is Granulaticatella, which I understand is very rare. Not sure how I contacted this, but am being treated with IV Vancomycin, and half way through an 8 week treatment. There was a small vegetation spotted on my Mitral valve. The Valves themselves have held up well, but in conjunction with the IE, now time to consider getting both replaced. The Aortic probably has another year or two, and I would say the Mitral have a a few months..I think.

My cardio recommended the Cleveland Clinic and replacing both again with tissues. Since I am 59, his thoughts are there is a newer generation of valves that have greater durability and they would both be able to be replaced by catheter, by the time they wear out.

Just looking for some thoughts on both, the IE and the valves, and who has had work done at the Cleveland Clinic. Both my valves are edwards pericardials and performed well during this time.

Thanks so much and hope everyone is well.

Happy New Year.

 

[pellicle]

Neal

well that's shitty news (the endo) and I'm sorry to read that.

Given the additional scar tissue that's going to be present with an operation on both valves (some years back) I wonder if you have considered mechanical (and if so why you've decided against that option). I would anticipate that its AC Therapy related. If that's the reason then I'd consider looking at how much advance there has been made in AC self monitoring and the improvements available since your last decision process.

Given that you're 59 I'd say that you're on the cusp of being a Tissue prosthetic type may indeed last you till your "end of days", but to face a replacement surgery at 79 (or less) would be a life threatening choice. (assuming that a tissue prosthetic will actually get you another 20 years, but it may)

Whatever you decide I hope that your New Year is indeed more prosperous

Best Wishes

 

[ottagal]

Hi Neil,
Wish I had the right answer for you. These are the times when sometimes it is easier when we don't have a choice.
All I can suggest is to speak to the experts, ask questions, read other's stories here, listen to your gut and weigh the pros and cons of both (with the correct info). Make sure the information you have at hand is fact and evidence based.


Wishing you all the very best with your decision. ]
May 2019 bring you health and peace.

 

[tom in MO]

You made a decision 10 years ago to go tissue and reoperation. Why did you originally choose tissue? If you believed that was the right decision and still believe it now, then it very well could be the right one at this time.

I am not up with catheter valve replacements, but when it comes to as yet unapproved treatments, my doctors told me straight up to not bet my life on potential future developments, since for me there were time-proven solutions.

 

[jwinter]

I agree with others here. Only you can decide. Make sure you ask a lot of questions and feel comfortable with the answers and then make that decision. I had a Medtronix(think that was brand) porcine valve that lasted around 4 years and was 60 when I faced second OHS. The way they explained it to me was that I could only get one re-op with TAVR(valve inside a valve) and with stenosis occurring in such a short time it would probably still mean another chest opening at a later date (later meant I would be older and less healthy maybe).

I have heard great things about Cleveland Clinic and think you should let them guide you to a decision. I went to Mayo in Rochester for mine and spent a great deal of time with the surgeon. Finally I said "what would YOU recommend" and then went back to hotel and thought on it a couple days. Started another question sheet, went in to see him, and made a decision on an ON-X. I have some other issues but surgery went very well.
My chest looks better and healed better than the first, so you just never know.

Main thing here is you do your homework, make the decision, and then know you did the right thing for you. Wishing you the very best.

 

[epstns]

That is sure a crummy spot to be in, but think of it this way -- At least you have some time to evaluate your choices. It didn't go "critical" overnight.

I would echo the other opinions that you should take your cardio made, but don't make any choices yet. Speak with the team at Cleveland Clinic - IIRC they are #1 rated for heart valve procedures in the entire country. See what they suggest, then decide. I imagine, though, that they will prefer tissue valves again. They were instrumental in the development of the Edwards pericardial valves you now have, and know them well. They will also probably agree to implant whichever type of valve you choose (tissue or mechanical), and do them well.

 

[NealR]

Thanks all for the great advise. Still waiting the outcome of the echo, will see what happens. I hope to get another two years out of the valves I have now with some tweaking and cardio meds. Thanks again to all wish the best for all of you.

 

[honeybunny]

I'm likely to be in your shoes sooner than later (bovine valve replacement 3 years ago; now 64). Occasionally I think about my options and am unsure as to which way to go. Thanks to members of this forum, I'm much less concerned about being anti-coagulant therapy than I was before surgery.

I wish you the best with your decision and peace once you have made it.

 

[ottagal]

NealR, hope you can get another few more years out of your valve....I am right there with you...going on 10 years this year...hoping to get more mileage...time sure flies by...

 

[pellicle]

...I am right there with you...going on 10 years this year...hoping to get more mileage...time sure flies by...

Its an interesting point and one which I often raise for those in the midst of "pre surgery horrors" that after surgery time does go on, and 10 years will pass. But at that point they can't see past the end of their nose.

I'm unsure of your age (and I'd never ask a Lady that question) but I feel that your decision has been good for you (not that what I think should matter a rats arse to you). I recently had a discussion with an elderly long term valver who is having knee issues with what appears to be a Popliteal cyst forming behind his knee. He's of the view that the bleeding that contributes to this was caused by his becoming less than diligent with managing his INR (which has been because he lives in the USA and being elderly and having been a contractor now doesn't have as good health care coverage due to financial issues (this is not a problem for those of use living in civilised countries I know). A recent INR check at a surgery (prior to aspirating his cyst) revealed an INR of 6.6

So what I'm saying is that if one does venture down the mechanical path, that management of INR is not just a "fad diet" ... its a lifestyle (emphasis on life).

Myself I'm quite convinced that I'll manage mine well (just rolled over my spreadsheet for 2019, so I have tons of data going back to 2012) and I keep building it, and keep weekly testing. INR management is sort of a lifestyle now for me and I like the weekly cycle of test and document (even when I'm abroad).

As a 54 year-old who's had 3 surgeries I can say that if you need to undergo another surgery at this stage its not all bad.

The issues are as always not as simple as the simplifications and the devil is always over there in the stack of details...

Happy New Year mate

 

[pellicle]

a post of my own on the second pillar: "The Dichotomy of Control"
http://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html

 

[ottagal]

Its an interesting point and one which I often raise for those in the midst of "pre surgery horrors" that after surgery time does go on, and 10 years will pass. But at that point they can't see past the end of their nose.

I'm unsure of your age (and I'd never ask a Lady that question) but I feel that your decision has been good for you (not that what I think should matter a rats arse to you). I recently had a discussion with an elderly long term valver who is having knee issues with what appears to be a Popliteal cyst forming behind his knee. He's of the view that the bleeding that contributes to this was caused by his becoming less than diligent with managing his INR (which has been because he lives in the USA and being elderly and having been a contractor now doesn't have as good health care coverage due to financial issues (this is not a problem for those of use living in civilised countries I know). A recent INR check at a surgery (prior to aspirating his cyst) revealed an INR of 6.6

So what I'm saying is that if one does venture down the mechanical path, that management of INR is not just a "fad diet" ... its a lifestyle (emphasis on life).

Myself I'm quite convinced that I'll manage mine well (just rolled over my spreadsheet for 2019, so I have tons of data going back to 2012) and I keep building it, and keep weekly testing. INR management is sort of a lifestyle now for me and I like the weekly cycle of test and document (even when I'm abroad).

As a 54 year-old who's had 3 surgeries I can say that if you need to undergo another surgery at this stage its not all bad.

The issues are as always not as simple as the simplifications and the devil is always over there in the stack of details...

Happy New Year mate

Thanks for the message, Pellicle. Always appreciate your insight, thoughts and support! You are a gentleman...yes, a woman does not tell her age! LOL. I hope that the time will not be soon for a 'redo'. When the time comes, I will be looking to this great forum for insight and support. OK...better go so I don't highjack this post.

NealR....do keep us posted. Thinking of you...

 

[esvaja]

Neal

well that's shitty news (the endo) and I'm sorry to read that.

Given the additional scar tissue that's going to be present with an operation on both valves (some years back) I wonder if you have considered mechanical (and if so why you've decided against that option). I would anticipate that its AC Therapy related. If that's the reason then I'd consider looking at how much advance there has been made in AC self monitoring and the improvements available since your last decision process.

Given that you're 59 I'd say that you're on the cusp of being a Tissue prosthetic type may indeed last you till your "end of days", but to face a replacement surgery at 79 (or less) would be a life threatening choice. (assuming that a tissue prosthetic will actually get you another 20 years, but it may)

Whatever you decide I hope that your New Year is indeed more prosperous

Best Wishes

Yo dinkum Aussie, He's around my age & I've so enjoyed not monitoring biweekly. For my 2nd I've chosen the inspiris resilia. It comes with a future ability to mate perfectly(?) with a TAVR. I travel alot, am fairly active & given the stats they have so far- approx 10 yrs it's very encouraging. My big day is April 20th & yes it will be no fun but with the TAVR option I'm one more & done

 

[pellicle]

My big day is April 20th & yes it will be no fun but with the TAVR option I'm one more & done

Best of luck with that