Longevity

[Peter]

Hi folks - I had an aortic valve replaced 9 years ago on the 28th of this month as a result of bacterial endocarditis - I was 30 at the time. I have a tilting single disc valve made by carbomedics - not sure of the exact name. I think the oncoming anniversary has brought on fears of valve failure and whether I will have to be operated on again although the only problems I've had in the past 9 years where a few excessive bleeds which led to hospitalization. My INR is fairly regular at 3-4.5 and my warfarin dose 5mg daily. I'm single and I'm currently thinking about the rest of this whole shebang and how long I'll be in it - should I sign up fore a pension etc.
I guess I'm looking for a bit of reassurance.
Anyhows, it's been good to get this of my chest
Best,
Peter
London UK

 

[WayneGM]

I can't speak from personal experience given I only had a mitral valve repair a little over a year ago, but from the members here there seems to be a lot of evidence of normal life longevity. I'd look forward to being around for retirement.

 

[Karlynn]

Peter - welcome!

Longevity of mechanical valves is often discussed. Many people say that since you had your valve put in when you were 30, you probably will need another replacement at some time in your life. Others will say "Why not expect it to last your entire life?" The reality is - no one knows. I was 32 when I had my valve replaced with a St. Jude over 15 years ago. We have a member, Dick, who had his valve replaced at 30 - and he's now 70 and the same valve is still in and working well. Twinmaker has had her dual valves for 25 years, other members 20.

These valves are designed to last forever. It's our own bodies that sometimes cause them to need to be replaced due to scar tissue encroaching on the valve, tissue issues surrounding the valve, etc. My last echo in December showed that my valve was free and clear of any scar tissue and other "nasty things" that would cause failure.

You can also look at it this way - if you had a tissue valve installed, which it seems more and more younger adults are going with, you probably would be facing another certain replacement right about now, or in the near future and you could possibly be dealing with symptoms from valve deterioration. So while valve longevity concerns you, there were other choices that would have made more surgeries a certainty and not just guesses.

Do you mind if I ask you how your bleeding incidents occured and when during the last 9 years?

 

[Ross]

Peter fear not, you will live to be 90 or more. Just kidding, you should have a normal longevity barring being hit by a car, struck by lightening or any unforeseen acts of God.

 

[Nancy]

Well, Peter, my husband had an aortic valve replacement with a Bjork-Shiley valve similar to yours when he was in his forties, and then much later on had a mitral replacement with St. Jude mechanical. When he had his aortic replacement, these valves were relatively new, and he was told to enjoy his life because he probably wouldn't live past 50.

He passed away this past December at the age of 75, and not from valve failure. Both his valves were chugging right along until his last moments on earth, and the aoric one was 29 years old.

He had multiple medical problems and various forms of organ failures. In spite of all of his medical problems, he still managed to live to a fairly ripe old age for a person in his condition.

Mechanical valves are very, very, very long lasting. So I would say that you'd better plan on sticking around for quite a while.

 

[Marguerite53]

Welcome, welcome! You've come to a great place for support. I'm almost at a year with a tissue valve, so not much help in some respects.....

But.....please take some time to read up on coumadin management here. We have a link to a website (Al's) which has been of enormous help to those managing INR. Perhaps you can fend off any further bleeds by learning abit more from a new source.

Please let go of the notion that you cannot plan for a long and hearty future! Make HUGE plans!! You will almost certainly be healthy and well to experience them. You are probably more likely to get struck by a car than succumb to your valve anytime soon (especially since you Brits drive on the wrong side of the road!! )

So join in. Share your fears and experiences. We will be happy to respond and support. And in doing so, you will undoubtedly help others who may be harboring some of the same feelings.

Again, welcome!

Marguerite

 

[sue943]

Hi Peter. Where did you have your surgery? I was in St George's, Tooting with my endocarditis.

 

[dick0236]

To: Peter

To: Peter

Don't get caught up in trying to figure out Mortality. It's a BIG waste of time.
I was 31 when my mechanical aortic valve was implanted. That was in the "dark ages" of 1967. For decades I tried to answer the question of "how long would I live" or "when would I need the second surgery". Neither has happened and I am now 71 and very active. My docs tell me that someday I will pass away, but it probably won't be from the valve. Incidently, I DID take an early pension at 55. My reasoning was that I wanted to get some of the money before I died. In retrospect I should have waited till 65 (the monthly check would be a lot bigger). I know that I now have the benefit of a lot of hindesite and it is easy for me to say "don't worry". I also know that it is not possible to not worry because OHS is a BIG deal. Just try to keep it in perspective. By the time you get to be an old man, they'll probably be doing OHS as an out-patient procedure even if you should need it then.

 

[geebee]

Welcome Peter.

I am a huge science fiction fan and many stories speak of humans with bionic parts in order to live longer. We have eye implants, joint replacements, etc. and never stop to worry about life spam with those items. I think we should start looking at heart valves the same way. They are implanted to correct a defect of nature and there is no reason to believe they will not get us a normal lifespan if not longer.

Although I am one of the "unlucky" ones who did require additional surgeries despite a mechanical valve, I have still lived over 26 years with a mechanical valve. I fully expect at least 26 more and do not expect my valve or coumadin to be a factor when I do leave this earth. I am thinking perhaps a meteorite hitting my spaceship as I travel to the next galaxy when I am 110.

Sign up for that pension - space travel will be expensive for awhile.

 

[Lisa in Katy]

Our valves are about the same age - my 9 year anniversary for mitral valve replacement with a St. Jude's is on June 30. I'm nowhere near read for a re-op at this point. The reason I opted for the mechanical is because they told me that at my age (36 at the time) I could expect to live at least 40 more years. With a tissue valve, that would have meant several re-ops (average at the time was every 10 years, although I understand that's changing). With the mechanical valve, it probably would mean only one re-op, predicted at close to 30 years from the first surgery, although that too is changing. My brother had his aortic valve replaced in April of 1993, and even though he is fairly non-compliant with Coumadin, his valve is still going strong. In the 9 years since my surgery, they have made so many advancements in the surgical procedure. No longer is cracking the sternum a necessity, and often they are able to go in through a tiny port. I figure that by the time we need a new surgery, it will be so minor compared to our last surgery, we will wonder why we waited so long!

 

[Arlyss]

Hi Peter,

I am wondering about the underlying reason why your own aortic valve failed at such a young age. If you had a bicuspid aortic valve or have some other type of connective tissue disorder, you should have your aorta checked for enlargement/aneurysm. If the aorta should tear, it is a life-threatening emergency.

Regarding the valve itself, there is a very helpful medical paper that discusses how all prosthetic valves, both tissue and mechanical, should be followed by your doctor. Here it is - you might talk about it with your cardiologist

http://bicuspidfoundation.com/Evaluation_of_Prosthetic_Heart_Valves_Van_den_Brink.pdf

If you put a plan in place with your doctor to check on your valve (and aorta if needed) periodically, you should have every confidence that you can live a full, active life.

Best wishes,
Arlyss

 

[Philip B]

Mortality?

Mortality?

Hi Peter,

You've probably figured-out that a lot of the folks here face the whole mortality, longetivity thing with a super positive outlook. My cardiologist likes to talk about one of his patients who had AVR over thirty years ago and is still going strong.

None of us can predict his or her future. Chances are pretty good that all of us who have undergone valve replacement surgery will eventually die from causes unrelated to heart issues.

Life is a whole lot more fun if one focuses upon its positive aspects. Keep a positive attitude and outlook; do not get yourself pulled into any kind of "doom and gloom" mode. As someone else stated in a previous post, worrying about the mortality, longivitiy thing is a waste of your time.

-Philip

 

[Arlyss]

Hi Peter,

I read your post again and notice that you had endocarditis - I am still wondering if your original valve was bicuspid or some other malformation - those born with BAV are prone to endocarditis, and there are statistics that show it happens most often in the young.

Regardless, having a good follow up plan for yourself will give you confidence that you and your doctor(s) know all about what is inside your chest.

Best wishes,
Arlyss

 

[Shone'sGirl]

Hi Peter. I had endocarditis when I was 9 and it eventually led to my AVR. However, when I got my valve my surgeon told me it would last 200 years and so you guys are freaking me out with the possibility of a re-op. I'm already facing surgery every 10 years because of the pacemaker. (In fact I'm probably facing surgery in 2 years because that's when my leads will need to be replaced). I know it's different for everyone, but I have 190 years left on my valve and I believe that it will stay that way.

So, Peter, I don't think you should worry. I've had mine 10 years and I'm doing great. You'll be fine.

-Clare

 

[Arlyss]

Seventeen years ago today, my husband received a mechanical valve. We were told it would last well over 100 years - that it had never failed in laboratory testing. That sounded wonderful.

In 2001, there was an opportunity to replace that valve when his chest was opened to remove his ascending aortic aneurysm. The valve looked good at 11 years old, so it stayed in place.

On Novemeber 30, 2005, fine, hair-like strands of tissue on the intake side of the valve broke off and went to my husbands brain. He had the equivalent of 4 or more strokes all at once. The mechanical valve kept opening and closing. But it was the source of very major harm to my husband after 15.5 years.

The human body is very different than experiments in a laboratory. There they can simulate mechanical exercising of a valve that is the equivalent of 100 plus years of opening and closing. But they cannot simulate all the conditions inside the human heart. The pathology report on his old mechanical valve showed pannus (tissue) overgrowth around the valve, and also fraying of the fabric sewing ring. The tiny hair-like strands were too small for the pathologist to see.

The actual proven time for valves inside the human body still has a fairly young history - the first aortic valve was replaced by Dr. Harken with a mechanical in 1960. The first complete replacement of a mitral valve was done that same year.

It is extremely important that they do all the engineering tests. They are vital. There must not be any physical failure, so these devices need to be vigorously exercised. (The Bjork-Shiley strut failures were in our local newspapers seventeen years ago, just as he went in for valve surgery.)But we have learned that mechanical failure is not the only source of problems, and in every possible way, the valve should be followed.

Last year, my husband received a new tissue valve. This time we were told something more realistic - words in agreement with the 2006 Guidelines for Valve patients. Every prosthetic valve, whether tissue, mechanical, or self donation/homograft (Ross procedure) needs to be followed.

Despite what has happened to him, I encourage my husband to enjoy each precious day. We don't want it spoiled by worrying about his valve or his aorta. But we will always be sure to have a follow up plan in place for him.

Best wishes,
Arlyss

 

[Susan BAV]

Welcome, Peter; glad you found the site! Take care and post again.

 

[Peter]

Hi Folks,
Apologies for the delay in replying - Some background: I had a heart murmur from birth but never realised the full implications other than having to take antibiotics before visiting the dentist. Then in '98 i developed endocarditis although this was initially diagnosed by my GP as a chest infection. I ended up extremely ill one morning and I thought that I'd better drag myself to a&e at the Royal Free in London. Got the whole picture about an hour later and I was taken to the London Chest Hospital for the op that evening - if I had gone to work that day or stayed at home I probably wouldn't have been around to type this. All pretty scary stuff. I had post operative problems as the bug that had settled on my valve took a while to shift and I was an in patient for apprx 5 months. Went to a great cardiac rehab course at the London Chest after leaving hospital and I got myself a new job in February of '99 and I haven't really experienced any major problems. When I went to a&e with the two bleeds that I've had in the past 9 yrs the Dr's were unable to pin down exactly why my INR levels shot up - it could've been the other meds I was on, the half a lager I had the night before or venus being in conjunction with jupiter!. My main peeve now is with getting my bloods done regularly as I have to get up at the crack of dawn to make it to the clinic and to get to work! It's good to hear all your experiences and I have taken a measure of comfort in them (signing up for the pension scheme next month!). Now what I really need to do is sort out my cholesterol and get some regular exercise - Thanks to everyone who responded.
Peter

 

[Ross]

Peter home INR testing should be available to you. You might want to check into that. Once you home test, you'll never want to set foot in a lab again.