Tissue Regrets??

[AnnieP]

Hello again. It’s been a while since I’ve posted, but I read quite often. Something I read here recently is what’s inspiring me to write now. It’s about TAVR.

You see, I had my first BAV repair in 1993 at the age of 27, which lasted until 2007 when I had it replaced with a CE bovine valve. At the time, my surgeon told me that he recommends a tissue valve because “eventually” they’ll be able to be replaced through the groin (i.e., TAVR). So, naturally, the latest advancements in TAVR are of great interest to me, and most of what I’ve read is encouraging.

Some information I read here, however, from the pro-mechanical members is giving me some consternation. What with the TAVR is too much of an unknown quantity, so mechanical is the way to go sentiments—namely the increased risk of aneurysm with TAVR—I’m wondering if I made the right decision on my 2nd OHS to go tissue.

It’s been 11 years now, and my echo in January showed the valve is still holding up. My annual physical with my GP checked out fine, and my last checkup my cardio said the valve “sounds great.” Further, “it can last 15 or 20 years or longer. Until then, just live your life.” When I asked him about the latest he’s heard on TAVR, he said it’s not a certainty I’d even have a TAVR replacement; it may have to be traditional! TAVR is currently only for high-risk patients, and I qualify as one because of my multiple surgeries and that I had a TIA (mini stroke) prior to my second surgery. It’s not, however, a guarantee.

But the whole point of my going tissue was the prospect of TAVR. And now it may not even be an option. They may have to carve me open anyway, and that’s something I don’t want to go through again. The second op was really brutal, not just painful but also had a collapsed lung during recovery. The thought of a third OHS… Again, it seemed like the right decision at the time.

So, what is the point of this post? I’m not entirely sure. I imagine I’m like a lot of you out there: nervous, trying to stay positive, and live in the present and not worry about the future. But will my past come back to haunt me?? Perhaps some words of encouragement for this two-time OHS vet, now 52 years old and worried that his most important decision he made was the wrong one?

Things move along over time in another 5 years it could be that TAVR is the recommendation for 1st line treatment. However you cannot second guess yourself you made that decision at the time based on the most relevant information and your circumstances available at the time ( as did I )
Cheers
Annie P

 

[Warrick]

+1 for the St Jude Regent.
“Pyrolytic carbon is the world's hardest manufactured substance, contributing to the extraordinary strength and durability that have been a hallmark of the St. Jude Medical(R) mechanical heart valve.”

 

[johnnycake23]

I've read every word on this thread, and my reaction is: You guys rock!

That you would take time out of your busy days to help a complete stranger who is feeling a little uneasy is truly humbling. And guess what--your efforts were not wasted. I went to bed last night feeling better than I have since I started this post a few days ago. You're all absolutely right. Live today, look forward not backward, my decision was the best I could make at the time. It all has resonated with me.

I understand this is a support site and this is what VR members are here for, to help each other. But still, sometimes it's nice to know we made a positive impression, that we made a breakthrough. And I would be remiss if I didn't say a thousand thank yous for caring.

As for my 6-month visit to my cardio yesterday, the valve "sounds great." Plus he was very pleased to see that I lost 25 lb. since my last visit. Score one for healthier eating and eschewing (and not chewing) sweets. So pleased in fact that he took me off the hydrochlorothiazide (diuretic, or as they'd call it in New England, the wicked pissah). No more twice-an-hour trots to the commode.

It was indeed one fine day.

With Much Gratitude,

Johnny

 

[Keithl]

Long time lurker here. First, I want to thank all the people who have generously shared their experiences concerning your heart valve story.

This forum is by far the best source available for balanced, objective information/data on the internet. I have learned SO much by just paying attention to posts and reading scientific/medical (hard to read) papers.

When I met with my surgeon in early March, I asked him what valve he would recommend, with out hesitation he said, “St Jude Regent”. I was initially taken back, but after time and consideration, that’s what I’m going with. At the end of our meeting he stated, “I’ll put in whatever valve you want, but the risk of future surgeries is greater than the “risk” of coumadin”. I’ll be 59 ½.

As so many people have stated, valve selection is an individual decision, get informed, do your homework, make your decision and commit to making it work. Looking forward to being on the other side.

Blessings to you johnnycake23

I am leaning heavily mechanical as my friend has had a mechanical valve for 19 years with no issues and he self checks his INR and has had no issues, he is 72 now. I am 58 and if I felt a tissue valve would easily last 15+ I might do it, but I see very few people on this forum with tissue valves going sting that long and on the contrary see more mentioning their tissue valves not lasting as long as expected.

 

[tom in MO]

I am leaning heavily mechanical as my friend has had a mechanical valve for 19 years with no issues and he self checks his INR and has had no issues, he is 72 now. I am 58 and if I felt a tissue valve would easily last 15+ I might do it, but I see very few people on this forum with tissue valves going sting that long and on the contrary see more mentioning their tissue valves not lasting as long as expected.

It's hard to base a conclusion on the absence of information. One is not likely to complain if the tissue valve lasts longer than expected. A person can't complain if they die of something else before their valve needs to be replaced which is the case with many older patients that get tissue valves.

 

[ottagal]

I've read every word on this thread, and my reaction is: You guys rock!

That you would take time out of your busy days to help a complete stranger who is feeling a little uneasy is truly humbling. And guess what--your efforts were not wasted. I went to bed last night feeling better than I have since I started this post a few days ago. You're all absolutely right. Live today, look forward not backward, my decision was the best I could make at the time. It all has resonated with me.

I understand this is a support site and this is what VR members are here for, to help each other. But still, sometimes it's nice to know we made a positive impression, that we made a breakthrough. And I would be remiss if I didn't say a thousand thank yous for caring.

As for my 6-month visit to my cardio yesterday, the valve "sounds great." Plus he was very pleased to see that I lost 25 lb. since my last visit. Score one for healthier eating and eschewing (and not chewing) sweets. So pleased in fact that he took me off the hydrochlorothiazide (diuretic, or as they'd call it in New England, the wicked pissah). No more twice-an-hour trots to the commode.

It was indeed one fine day.

With Much Gratitude,

Johnny

That is great news! Now you can get out there an enjoy life!

 

[suzle]

Firstly, I see its your first post, so welcome aboard.


I hope it goes well for you ... travel is no problems, as you may find when you explore some of my posts I've been back and forward to Finland a few times and enjoy the XC Skiing over there.

Best Wishes

PS
I'm a bit lost as your bio seems to suggest no AVR yet, but the above post suggests you've had it a year ago.

I hope you're recovering well.

Thanks. Yes, all is going along well, though I still can't exercise to the same level as before.
I joined the group ages ago, long before surgery, but never became active, as I'm not very chatty! By chance, I got an email update from the site, and decided to take another look.

 

[Duffey]

I am leaning heavily mechanical as my friend has had a mechanical valve for 19 years with no issues and he self checks his INR and has had no issues, he is 72 now. I am 58 and if I felt a tissue valve would easily last 15+ I might do it, but I see very few people on this forum with tissue valves going sting that long and on the contrary see more mentioning their tissue valves not lasting as long as expected.

I haven’t been around for a while, but if you’re wanting testimonials to bovine valves’ longevity, mine’s been in for 14 years, soon to be 15, and the cardiologist says it’s still working fine. As Tom mentioned, members with no valve issues or no need to seek anti coagulation advice are typically less active on this forum. You may note that the anticoagtion forum usually stays busy with members seeking advice, and they almost all have mechanical valves implanted.

 

[epstns]

Sorry for being late to the discussion. I see that the usual folks are able to lend their perspectives to this never-ending question.

That said, I am one of the tissue valvers. Mine was implanted at age 63. My decision was made with "both eyes open." I knew full well that there is the possibility that I could need another replacement. My valve was said to "probably last 15 years or more." I've gone 8 so far, and all is well. . . but that is no guarantee of anything except the past. We know that. I just wanted the relative freedom of the tissue valve, and my surgeon was (still is) one of the top docs for the procedure with that particular valve. I probably hit all the speed bumps on the road to recovery, but that would likely have been the case no matter which valve I had chosen. I also had minimal fear of warfarin, as my mother had used it for years due to her afib.

I just know that if I do need another valve, I will again choose tissue. Heck, if I make it another few years on this one, then if I do survive the next replacement, a new tissue valve would likely last as long as I would otherwise be expected to live.

 

[Keithl]

I understand that many people with no issues will not show up here to rave about their tissue valves, but at 58 I can be sure that is I go tissue I will need another valve at some point unless something else kills me first. I had a long conversation with the surgeon today and told him I am risk adverse to another operation and he agreed that while issues can occur with mechanical if I manage my Coumadin well the risk of mechanical reoperation is very very low and that at my age a tissue valve would not last as long as if I were 65 or 70.

Oddly he offered me a new procedure call the Osaki procedure since there is a surgeon here in Cleveland that was trained by professor Osaki in this procedure where they use your own tissue to develop a new aortic valve. It has promise of lasting longer than a standard tissue valve, but still has similar risks long term as tissue valves. Also it is technical not experimental, but there are special waivers and consent forms for it. Clearly I am too risk adverse to try this as when I go back to Atlanta if I have issues I have no confidence they could handle it. If I lived in Ohio I might have been intrigued enough to try it.

He did say that if I went tissue valve the success of TAVR is much better because the structure of the OHS implanted tissue vaalve makes it easier for them to set the TAVR valve.

Well I am T-minus about 10 hours until crack time and hope to be back here in a few days to share my experience.

 

[Seaton]

Well I am T-minus about 10 hours until crack time and hope to be back here in a few days to share my experience.

All the best in T-minus 10, Keith. We’ll be cheering you on. Looking forward to reading your post-surgery updates.

 

[Keithl]

I will say this to anyone thinking about Cleveland, this place is top notch, amazing patient care and extreme thoroughness in all aspects far more than any testing I have had in all the years of testing in Atlanta. I have no regrets about spending the money to come here. Thank you all for your support, I hope to be joking about this in a few days.

 

[AnnieP]

I understand that many people with no issues will not show up here to rave about their tissue valves, but at 58 I can be sure that is I go tissue I will need another valve at some point unless something else kills me first. I had a long conversation with the surgeon today and told him I am risk adverse to another operation and he agreed that while issues can occur with mechanical if I manage my Coumadin well the risk of mechanical reoperation is very very low and that at my age a tissue valve would not last as long as if I were 65 or 70.

Oddly he offered me a new procedure call the Osaki procedure since there is a surgeon here in Cleveland that was trained by professor Osaki in this procedure where they use your own tissue to develop a new aortic valve. It has promise of lasting longer than a standard tissue valve, but still has similar risks long term as tissue valves. Also it is technical not experimental, but there are special waivers and consent forms for it. Clearly I am too risk adverse to try this as when I go back to Atlanta if I have issues I have no confidence they could handle it. If I lived in Ohio I might have been intrigued enough to try it.

He did say that if I went tissue valve the success of TAVR is much better because the structure of the OHS implanted tissue vaalve makes it easier for them to set the TAVR valve.

Well I am T-minus about 10 hours until crack time and hope to be back here in a few days to share my experience.

All the best

 

[Classtime Sailer]

I’ve gone 8 1/2 years on my Porcine AV riding my bike pretty hard 7-9,000 miles a year with some racing/strenuous 130 mile rides. I turn 61 in May. I wouldn’t change a thing. I’ll celebrate my retirement with a new valve. (Or celebrate my new valve with retirement.)

 

[DanO]

Hi, JC, I do understand your concerns since I have shared them. I am older than you but, that aside, not much different. At 59, my aortic valve was replaced by a CE Bovine valve. In preparation for surgery, I learned that my problem was genetic and was a problem from my maternal Uncle and my maternal Grandfather. In 2009, my surgeon recommended the CE Bovine Pericardial valve both because of its performance, no need for anticoagulation therapy, and because my Uncle Bob experienced tissue growth that disrupted his mechanical valve which was then replaced with a porcine valve. He also talked about TAVR as a possible alternative in the future although at that time these were used only when patients were too frail to survive surgery.

Well, it's now 2019 and my CE Bovine valve has failed and I am seeing numbers that are familiar from the past.....valve area of 0.8 cm2 with a peak pressure gradient of 66 mm hg. On the one hand it is disappointing that the valve has not lasted for even 10 years but it did give me good service. Next week, I will recieve a Medtronic CoreValve via TAVR. Obviously, things have changed. For one, the protocols for who is a candidate for TAVR have changed. I'm reasonably healthy but at 69 I do have some other health issues and, thought none of them are major, they combine to make me a good candidate.

Some of what I have learned resulted from MEDICARE requiring that I have consults with two cardiac surgeons to insure I understand the risks and benefits of both types of valve replacement. Both surgeons told me that I currently have little to gain from another open heart surgery. Today's protocols discourage using mechanical valves in people over 70 and favor biological prostheses. Both my Cardiac Specialist who will implant my valve and the surgeons said that in from the present into the foreseeable future there are going to be fewer open heart surgeries and more TAVR because the risks are lower for a similar benefit. That does still leave me pondering about what happens ten years from now or so when the CoreValve (a porcine valve) calcifies.

Their response to the question was that we are now beginning to understand the source and process of calcification and that new drugs are being researched today which should soon be available to help prevent calcification. One new drug being tested in humans this spring is designed to treat rheumatoid arthritis but during the research it was found to also turn off the gene that is likely responsible for valve calcification whose source is genetic. As my Cardiac Specialist observed, the CoreValve seems to be holding up better than earlier bio-prosthetics and if this can be combined with treatments that at least slow calcification the valve should last longer.

We cannot count on those things all working out in time to be of help but if even some of it does, it can only be better for us. If nothing else, know that your concerns are shared and you have your own community within which to express them.

I guess I'm must soon change my logo from a Bull to something more porky.

Larry
[email protected]
Tulsa

Good Luck Larry - looking forward to your post-TAVR updates !!

 

[sweetbanker]

On my second tissue aortic valve. First one 8 years ago the smallest bovine valve was placed and I ended up with stenosis again. Had to do OHS to replace but I am a candidate for TVAR and if I ever to need it replaced again could be done. This one is a porcine with a bovine patch but surgeon and I felt I shouldn’t have any problems. So far so good, was 7 months ago.We both agreed tissue is better and I’m 57. Good luck whatever you choose.

 

[sweetbanker]

I will say this to anyone thinking about Cleveland, this place is top notch, amazing patient care and extreme thoroughness in all aspects far more than any testing I have had in all the years of testing in Atlanta. I have no regrets about spending the money to come here. Thank you all for your support, I hope to be joking about this in a few days.

Should be over as I post this hope all went well.

 

[Debster]

My mom has had a porcine mitral valve since April, 2005. She had rheumatic fever as a child and the valve finally needed to be replaced. She was 65 then. Fast forward to now-she is 78 and that piggy is still going strong. Feel very blessed-not sure what will happen if it needs replaced. She was very sick at the time of her surgery but now so far so good!

 

[CAWwindy1]

I had a Carpentier-Edwards pericardial tissue aortic heart valve ( 23mm ) installed at London University Hospital in 2014. I had a triple by-pass completed at the same time. The surgery took 5 1/2 hours which was a little longer than normal .The doctor indicated the vein they removed from my leg to use in the bypass was larger than expected and required some finesse during surgery to stitch it in properly. Next Tuesday ( April 30th ) will be my fifth anniversary post op. I feel great and see my cardiologist yearly . Hope the next 5 are just as good. I was 64 when I had the operation and my cardiologist indicated I should see 20 years with this valve . With all the new talk about TAVR in the last few years I am confident that should I ever require a replacement that will be a good option for me.

 

[haggis basher]

Hi All. I was a top masters runner in 2011 (distance)(age71), I had a new tissue (pig) aortic valve done. Since, I've ran hundreds of races up to 10km, and in 3 weeks doing 11'5km run of half marathon in Sydney (age 79 ) My valve seems as good as when it was put in. I expect my next valve will be by TAVR, but not till I reach 90 age. Lol. Still run 5km in 30 mins. But as someone said " I take it one day at a time"!