Young adult life expectancy

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R

robojerry

Member
Joined
Aug 18, 2009
Messages
14
Location
Manchester, UK
Hi fellow valvers,

When I first had my aortic valve replaced with a St Jude mechanical valve three years ago I didn't really think about the "long term". I was 23 at the time and kind of breezed though the operation and the recovery, maybe ignoring the seriousness of it all. About six months ago , however, I started to really worry about life expectancy and my health. I did the usual google search of "avr life expectancy, young adult, etc" and came up with results that seemed rather negative and depressing, placing life expectancy at around 16-22 years for someone in my position.

Then, however, I found this site and read that there were flaws with some of these studies/they couldn't be trusted/or just that there were plenty of people on here that proved them wrong, or at least inaccurate. It really put my mind at ease. Lately though I have started to worry again, I know this is not a new issue, and that it has been discussed on here already, but I'm really scared about how my avr will effect my future. I can't stop thinking about how I'm already three years into my post-surgery stage and that 16 years isn't that long. Then I look at the studies again and begin to get so worried that I can't really enjoy my life.

I know this is a silly thing to worry about, and I could get hit by a car today or live until I'm 100 years old - stranger things have happened right? I guess I don't really know why/what I'm asking, because no-one can assure anyone that they will have a long life. But what can someone like me expect in the long term?

I guess, as well, I just wanted somewhere to voice my worries and fears.

Best wishes
 
Hi. Robo!

Of course there is variation among individuals. Most of those life expectancy figures are based on old statistics. Life expectancy is going up all of the time, due to better treatments. Main advice: Take your medications as directed, watch for fevers/check out unusal infections, follow the exercise advice of genetcists, if available to you.

I was just at an educational event at Johns Hopkins Hospital research center. Please see my posting on Losartan/Cozaar in Bicuspid Valve/connective tissue forum.

I am not sure what your particular diagnosis is. I was originally diagnosed as having Marfan Syndrome, which is rare but historically had a life expectancy of 30 for men and 40 for women BEFORE HEART SURGERY was available. In 1990 when my aneurysm was spotted, the life expectancy was 40 for men and 50 for women. After medication (as well as open heart surgery) became better, by 2000 we were told that the life expectancy of Marfan people was in the upper 60s--close to the life expectancy of an average American. (I think you in UK have higher life expectancies, but that is another can-of-worms...)

I was changed from being considered Marfan to being Marfan-like and eventually to having Bicuspid Aortic Valve disorder with an aneurysm in the ascending aorta. My life expectancy is close to "normal" I believe, although there are plenty of other things people of my age can wonder if they will die of. (Both of my parents died of dementia--one going into it at 70 and dying at 79, the other going into it at 78 and dying at 89--YOW!)

At the lecture I just attended, the results of the medication Losartan/Cozaar test on Marfan patients were discussed. This medication has been shown to really extend health and life-expectancy in Marfan people. (It is especially miraculous when given to children diagnosed with Marfan and who have yet to sustain the worst deterioration to their various Marfan-susceptible organs--heart, eyes, lungs, muscles, spine.) Dr. Hal Dietz (the lecturer) told me specificly that I, as a BAV+aneurysm person--not a marfan syndrome person, should still continue to take Losartan/Cozaar because his study of microscopic views of tissues from BAV+aneurysm people showed a great similarity to tissues of Marfan people. He specified that regular BAV people with NO ANEURYSM were not considered to have the same problems and would not need Losartan/Cozaar. (Losartan is expensive in the US right now, but will go to generic versions here in the next month or so, said Dr. Dietz.)

So, if your situation involved an aneurysm, in my non-medical opinion, be cautious and get on Losartan-type drugs (of which there will soon be many). If you only had other valve malformations, then follow medical advice but do not worry excessively.
 
Hi Robojerry,
I'm not sure about life expectancy, but what I try to do is focus any worry towards controlling the things that I have control over that will improve my life expectancy. The things I try to do include exercise, practice a good diet, that is, eating good wholesome food and avoiding bad foods, and trying to enjoy the life I've been given with AVR. I have also tried to connect to the fun things in life like hobbies, friends, and family and not overwork. I suggest that if your worry becomes excessive that you speak to your doctor. Best wishes for you.
John
 
Let me answer you in short. Your going to die someday, but the chances of it being from your valve or because of it's replacement are so miniscule that it's not worth worrying about at all. Now if you have had multiple surgeries, you stand a better chance at shortening your life span, but you should still live to see great grandchildren.
 
robojerry said:
Hi fellow valvers,

I guess, as well, I just wanted somewhere to voice my worries and fears.
Click to expand...

Hi Jerry and welcome. You're asking the question that ALL valve recipients ask from time to time. When I had my surgery, the NORMAL life expectancy for a 31 year old healthy male was 73 and I was really hoping I would make it to 50....I am now 74. Try to live a "reasonably healthy" life, manage your INR....and live one day at a time!
 
hi r.j. i know how you feel. been there a bunch of times. even today as a matter of fact. i still sometimes worry when the other shoe is gonna drop but then i move on to figuring out what will be for dinner or what is the next rrip ill take or just hug my kids. but when i was 20 i had my 2nd ohs. then 29 my 3rd ohs. today i am 40 and a few days and have had 5 ohs! i pray to god everyday for a long life- long enough to have grandchildren! i hope i get another 20 out of my new, almost 1 yr old valve. I doubt there are any studies out there that will tell me when my time is up but until then i try hard to live each day like its my last. think thats the best we can all do. you are young! so just try not to think about it and have fun while you can!
 
I would go with Adrienne's comment. They also say a mechanical valve will last a lifetime. That stat is based on a much older patient. Put that same valve in a 30yr old....and if all goes well, 25-30 until 2nd replacement.
 
Live

Live

OHS tends to bring us face to face with our mortality. That being hit by a car thing...been there, done that, but I'm still here.

I think the comment Ross made is realistic. We are going to die some day. For most of us the future is sitting out there just over the horizon. For me personally, I'd rather focus my attention on what I can do to make things better for people now rather than worrying about what's going to happen to me later.

It's normal to think about mortality, but I hate to see people get hung-up on it. Receiving a new valve is about getting on with life...Live!

-Philip
 
I was told that I would be lucky to see 18 after my first surgery at 9. This year at 39 I just had the mech valve put in. While I don't expect to see 90 I do expect to see a senior age. I doubt it will be the valve that gets me. My advice is to stay off the internet's morbidity sites.
 
LUVMyBirman said:
I would go with Adrienne's comment. They also say a mechanical valve will last a lifetime. That stat is based on a much older patient. Put that same valve in a 30yr old....and if all goes well, 25-30 until 2nd replacement.
Click to expand...

Where did you get that "(mis)information"? Mechanical Valves are designed for More cycles of operation than ANY of us can expect to see. It is my understanding that Pannus Tissue Growth is the Primary Cause of Mechanical Valve explantation.
Pannus Growth can affect both Mechanical AND Tissue Valves. Only one manufacturer has a built-in barrier to Pannus Growth (On-X).

We have (had) several members who have had their mechanical valves for 25 to 40 Years,
some with the Old Style Ball-and-Cage Valves that went out of fashion after the BiLeaflet Valves.
Nancy's Husband Joe lived to 75 after being told he would not see past 50 (but we don't all have Nancy looking out for us!)
GeeBee (no longer a member) has had a St. Jude Mechanical Valve for Many Years (I'm thinking 25-30)
Olefin is another Long-Term Mechanical Valver (I believe he still has one of the old Ball and Cage Valves.

'AL Capshaw'
 
Well heck, in 1991, before any of my heart problems showed up, I was told I wouldn't be around in another 10 years from my lung disease. Umm, I think I'm still here????
 
Hi everyone, thaks for your kind replies. I guess this is something that everyboby worries about, I just seem to be going through a prolonged stage of worrying about it at the moment. I keep getting palpitations, so that doesn't help. My doctor says that they are nothing to worry about, but the last time I got them was before I had to have my operation, so I suppose its just a little unsettling.
 
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