Re-op rates? Life expectancy and the future?

[jhusker2]

I always hear from medical professionals on how you should want to repair your valve instead of replace it, but what about those who didn’t or don’t have a choice??. That said, now that I have faced the reality that the surgeon couldn’t repair my mitral valve, I hope some folks can give me their opinions on life expectancy (I am 40), re-operation rates, and general outlook for anyone having or that had to get a valve replacement (I ended up with a CE Perimount Magna tissue).

Also, I heard from my surgeon that there are so many exciting things in the near future, that no telling what tomorrow will bring. So if you have the time, I would appreciate anyone’s opinion or words of encouragement for the future! Thanks in advance.

Jason

 

[Greg a]

...............
Also, I heard from my surgeon that there are so many exciting things in the near future, that no telling what tomorrow will bring. So if you have the time, I would appreciate anyone’s opinion or words of encouragement for the future! Thanks in advance.

Jason

Had my need for surgery been a mere 10 years sooner 1997-2007 I would have been the inspiration for some greener grass and nothing more

 

[Kathy McCain]

Hi Jason,

Good to hear from you!

I was 56yrs when I had my AVR (aortic valve) . I have a Medtronic Mosaic stented. My surgeon at the time, told me I could expect to get anywhere from 10 to 20 yrs from this valve, with 15 yrs being a more realistic estimate.

As you know everyone has a bit different experience. I am hoping for closer to the 15 or 20yr estimate.

If I don't die from something else first, I can realistically expect to have one more surgery.

My cardios say the same thing, for any future technology concerning reops,

Let hope they're correct!

Take care and keep posting!

 

[Mentu]

Jason, there are no easy answers to your questions. The studies available today, indicate that you should live a normal life span and there is no significant difference in survival rates between those with tissue valves and mechanical valves. Those same studies indicate that there is a significantly higher probability that a 60 year old person with a tissue valve may require another valve replacement but that does not alter the survival rate. That said, the tissue valves people received who were included in those studies were not your CE Magna which will not have enough of a meaningful track record for some years to come.

The other thing to keep in mind, Jason, is that all the statistical studies in the world cannot predict the outcome for one particular person. Studies can suggest probabilities but those are not certainties. The best thing you can do for yourself is to work to stay as healthy as you can which will benefit you whatever the future might bring. Additionally, if the work being done to repair or replace tissue valves without open heart surgery goes well, then a lot of the current discussion may become moot. Basically, the future of any individual human being is an unknown and that is no less true because you have an artificial heart valve.

Remember Mr Amundson, the first successful recipient of an artificial heart valve (mitral by the way) who returned home and lived for 15 years until the day he fell off a ladder. Like Philip Amundson, we are not likely to die because of our heart valves. Take good care of yourself, Jason, and try not to spend much time worrying about things you cannot change or know.

Larry

 

[normofthenorth]

+1 to everything those folks said! The simplest thing to do is to accept the fact that "It is what it is," or "Que sera, sera," and concentrate on recovering, and on living the best and healthiest (and longest) life that you can. You probably didn't know what your statistical actuarial life-expectancy was before your surgery, and it isn't obvious that knowing that info is any more useful or life-enhancing afterwards.

On the other hand, if you're a glutton for info like some of us, there are lots of studies out there, available here, or from Google or Google Scholar, or PubMed, etc., etc. Studies on the expectation that your CEPM valve will make it X years without re-op or without Structural Valve Deterioration, and studies on the life expectancies of recipients of similar valves. Because your CEPM valve (like my Hancock II) is an "established" model, it has a statistically solid 15-year record, and the 20-year data should be significant any minute now.

But even if the valve hasn't changed, all that data is still obsolete already, because surgical and post-surgical techniques have improved significantly. And if the current trials on PAVI/TAVI valve replacements bear fruit (as seems very likely based on European and Japanese experience), then our life-expectancies will probably immediately receive a few-year "bonus". You're young enough that you're likely to be younger than I am now when it fades, and you may be back here asking for opinions and input!

 

[jhusker2]

Thanks for the quick responses.

I know there is no crystal ball to tell the future, but I guess what I should've asked is -how successful have re-ops been for additional replacements down the road? Does the complication risk increase with each surgery, etc.?

Thanks again for all that wish to respond.

 

[ALCapshaw2]

Second Surgeries with experienced (re-do) Surgeons have almost as high a success rate as First Time Surgeries.

Member Nancy's husband was told he would not live past 50.
He ended up having 2 or 3 Heart Surgeries plus a couple of Lung Sergeries
and died of Multiple Organ Failure at age 72? or was it 75? I forgot.
Both of his Heart Valves were still functioning to the end and if I remember correctly,
one of them was an old Ball and Cage type that ceased being implanted many years ago.

A recent new member just reported having her Porcine Mitral Valve Replaced after 16 years
and Bovine Tissue Valves typically outlast Porcine Valves.

My recommendation: Keep up your regular follow-up examinations and Echocardiograms.
In the meantime, go out and Enjoy your Extended Life to the fullest.

'AL Capshaw'

 

[neil]

more or less as good as the first op, i face one down the line and am not worried about it, and in the meantime am gonna live live live for the day

 

[epstns]

As I get closer to my own surgery, one other thing that the surgeons bring to mind is that generally these tissue replacement valves do not suffer abrupt catastrophic failures. If one is failing, it usually follows the same pattern that a similarly failing native valve would follow, in which case you will have the same sort of advance notice you had this time. The reason I mention this is to help you to accept the advice already given -- don't worry excessively about the future many years from now. Do the best you can with what you can get now and worry about the next time only if it becomes necessary.

 

[normofthenorth]

A recent new member just reported having her Porcine Mitral Valve Replaced after 16 years
and Bovine Tissue Valves typically outlast Porcine Valves.

My recommendation: Keep up your regular follow-up examinations and Echocardiograms.
In the meantime, go out and Enjoy your Extended Life to the fullest.

'AL Capshaw'

"Hear Hear" to Al's recommendation!

Two footnotes to Al's info above: (1) That new member was 21 years old when she started those 16 years with her pig valve. The older you are, on average, the longer your tissue valve will last, and vice versa, so that new member did very well. (2) The latest and best study on a well-established tissue valve with a long track record was done on "my" valve, the Medtronic Hancock II pig valve, and done at "my" hospital, Toronto General. It's called "Hancock II Bioprosthesis for Aortic Valve Replacement: The Gold Standard of Bioprosthetic Valves Durability?" and it's here. Unfortunately, you've got to pay for an online copy, but my surgeon sent me a fax. In the last few pages, they compare their pig-valve results at 15 years to all the published 15-year results from all the other tissue valves, including the cow (pericardial) valves, primarily the CEP. The Hancock II has been holding up several years better, so it looks like that "bovine outlasts porcine" notion isn't backed up by the evidence =~ myth. (They discuss its origins in the "Gold Standard" study.) OTOH, the CEP has also been holding up very well (on average) over the long haul. That article gives some 20-year data for the Hancock II -- VERY good for the over-60 crowd, and not bad for the young 'uns -- and there should be some 20-year data published for the CEP quite soon, so we'll know even more.

As I've discussed elsewhere, it's always possible that the superior results of the pig valve at TGH aren't just because of the superior pig valve, but partly due to TGH being superior, or Ontario's partly-socialized medical system being better, or other factors that don't bear directly on valve choice. That's why we need multiple studies, slicing the data in different ways. . .

Or we can just live our lives as best we can, knowing that the future will arrive some day. . . One more personal choice!

 

[Lynlw]

If it helps at all my son (will be 23 in April) Has already had 5 OHS and his chest was open 2 other times and he is doing well. His first surgery was when he was 10 days old, so has had surgeries all his life and is going strong 23 years after his first surgery. He also had some VERY complex surgeries where they pretty much had to rebuild/reroute his heart. We've talked to NUMEROUS cardiologist and heart surgeons over the years at the top centers for Congenital Heart defects, and even tho they knew going into his 4th and 5th heart surgery that his case was riskier because his heart was fused to his sternum, so they had to be very careful opening his chest, when I asked straight out IF they thought he would make the surgeons we got opinions from ALL said YES, and one even pointed out IF he didn't expect Justin to survive the surgery he wouldn't be operating on him. They all said of course it was more work for them, but expected a full recovery and he would feel MUCH better after recovery than he did before surgery (and he hardly had any sypmtons). Since Justin's first 2 surgeries were in the late 80s he was in the hospital for WEEKs and actually in and out of the hospital his big 2nd surgery for the next 6 MONTHs with complications, but even then when he finally recoverred he did great and played sports all thru school. His surgeries in the 2000s he was home in 4 or 5 DAYs post op. He has had some post op complications, even had a bad infection in his sternum that needed ER surgery and weeks of antibioditic that was pretty scarey but again when that recovery was over he was back to "normal" and still on no meds.
My point is we've dealt with heart stuff over 20 year and were in the hospital, having surgery every decade so I've watch how much better things are as far as time for recovery and how much better just surving surgeries, even the most complex ones are today than they were even 10 years ago.

I also have talked to many doctors about what the future looks like, both Justin's specifically and heart surgery in general. Justin's valve he had replaced is his pulmonary valve with a dacron conduit, when he got that 5 years ago most of the doctors believed by the time he needs a new valve they will be able to replace it in the cath lab..2 years later he need his valve or conduit or both replaced. While waiting for the cath to figure out where the exact problem was we talked to several centers and IF the valve needed replaced we had talked about having it replaced in the cath lab as part of the Melody trials in boston, but he ended up needing the conduit replaced not the valve so needed OHS (the bovine valve looked brand new in the OR) Already since then the pulmonary percutaneous valve is FDA approved. There are already trials going for 2 Aortic valves to be replaced percutaneously -the Sapien trials have already released great results and hope to present the full trial the end of this year, and Corevalve is just starting trials in the US but have been used in Europe.

I know many people who had heart surgeries as children, when they were just starting some of the diffrerent surgeries and are still doing great and active in their 50s and 60s. So IF I were you I would plan on living a long and very happy life.

 

[jhusker2]

Lyn,

Thanks for sharing Justin's information along with your thoughts. First and foremost, I am glad to hear all of the positive benefits that you and your family are experiencing due to technological advancements in heart surgery. This is very encouraging for all of us!

Take care-

Jason

 

[Philip B]

It sounds like your surgeon has a bright, positive perspective. You should listen to him and move on with your life.

Unless I've missed something, it sounds like you've got a new valve that's functioning just fine. For the present, skip the worry stuff and move-on with your life. Have your valve monitored per your doctor's instructions and save the worry stuff for that day in the hopefully distant future when it's time to start talking about replacement of your tissue replacement.

The reality here is that none of us know how long our replacement will last. Sure, we rest our hopes on predictions of longevity, but we really don't know.

Plan for a long life and deal with whatever bumps you encounter along the way.

-Philip