Young Adults

[robojerry]

Hi fellow valvers,

I've not been on the site for a while, my last (and only) post was regarding life expectancy in young adults post avr. Since then I've continued to worry about those kind of things on-and-off, but also forgotten about them, been on holiday, worked, gone out having fun, studied, and a whole lot of other stuff.

Sometimes though, something will trigger darker thoughts about life with a replacement valve and how it will effect my future. Today at work (in a bookshop) I noticed a cardiology text book and couldn't help but flick through it and look at the aortic valve section which inevitably led on to the mortality rates for people with avr. It seemed to say that after surgery there was a 1% mortality rate per year cumulatively (or words to that affect). This got me thinking that in 20 years there will be a 20% chance I will kick the bucket because of my valve.

Now whether that is the correct interpretation or not, we all know that these stats are notoriously difficult because of different age groups etc, it has just put me on a bit of a "downer" for the rest of the day. I'm just wondering if there are other young adults on here who have got replacement valves that experience similar days, or just how you all feel about living with a replacement valve and if you think about what the future may hold. Also, on a lighter note, just want to say "hi" to people who have gone through the same thing.

Best,
Jarrod

 

[Michelle D]

Wow, you sound like me. I'm 28 and 8 weeks ago had my mitral valve repaired. When I'm not having more immediate problems such as pain, palpatations or things like that I do think about my life span and life quality. Part of it is that I've had some of the best surgeons in the world looking at my heart and none of them have an explanation of why my valve was the way it was. So I'm always worried that it will happen again. I also worry about my liver and kidneys from all the drugs they've had me on.

 

[scott.eitman]

I have never thought of it in this way. Strictly looking at hearts, I have always figured that my life expentency would not be that of my twin brothers. A lot of that comes from my life insurance which is betting that I will die sooner than later and charging more because of it.

On the bright side, there is so much knowledge about hearts now that was not availble years ago. And the knowledge is only getting better. I really think we have a good chance of living a long and full life. But you must stay involved with your cardio on a regular basis.

In addition, live and enjoy life now. Don't live in fear of the unknown. I never let my previous two valve rule my life and do not plan on doing this with this one either.

 

[ALCapshaw2]

I think that medical professionals sometimes get carried away with the idea of "Cumulative Risk".

There was a similar thread about the "cumulative risk" of being on Coumadin.
A member who teaches Statistics at Notre Dame University pointed out how this could NOT be supported mathematically and presented a formula (which was mathematically correct) showing how to calculate the risk of morbidity over time which does rise with age. The clincher argument was that if there is a 3% risk of having a morbid event and that risk is cumulative, then after 33 years, the cumulative risk of having a morbid event that year would be 100%. We KNOW that is NOT what happens. QED.

Think of the Risk of having an Automobile Accident. The longer you have been driving, the higher the chance that you have had ONE accident. That does NOT mean that the risk is Cumulative, just that the longer you have been driving, you have had more 'chances' of being involved in an accident and eventually your 'number' came up.

Check out member dick0236. He has had his aortic valve for 43 years and counting, and that was an older type of valve that is no longer even manufactured or used.

'AL Capshaw'

 

[dick0236]

Today at work (in a bookshop) I noticed a cardiology text book and couldn't help but flick through it and look at the aortic valve section which inevitably led on to the mortality rates for people with avr. It seemed to say that after surgery there was a 1% mortality rate per year cumulatively (or words to that affect). This got me thinking that in 20 years there will be a 20% chance I will kick the bucket because of my valve.


Jarrod

Nope:eek2:, this is a SILLY and against the mathematical laws of Statistics. The risk MAY be around 1% after surgery and will increase slowly with age due to the aging process......but it is NOT CUMULATIVE.. Anyone who literally believes this, should give me a call.......I'll sell you a bridge, maybe the London Bridge:cool2:.

The initial risk of not surviving the surgery in a young, otherwise healthy, adult is probably only 2-3%. When I had this done, the initial risk was 6-8%:eek2:. My point in posting this is that as technology, medicine, etc improves, these "longevity risks" will continue to decrease:thumbup::smile2::biggrin2:.

 

[Mentu]

Jarrod, pause a moment. Statistical studies are very useful when describing large populations of people and what happens to them over time. HOWEVER! Such studies do not predict the experience of individuals. No one can predict your future using statistics. On the other hand, you can choose to alter your future. Living thoughtfully and maintaining good cardio vascular health will always stand you in good sted whatever happens. If you work to stay healthy, you are better prepared in the event something undesireable does happen.

In the event your valve or my own fails and must be replaced, staying as healthy as possible will help to insure another good recovery. Do what you can to change your present; there is just no benefit in worrying about things you cannot control.

Jarrod, consider Philip Admunson who was the first successful recipient of an artificial heart valve. At the time of surgery, his valve was in terrible shape and was expected to die soon without intervention. He received his Starr-Edwards valve 50 years ago tomorrow, 21 September. It restored his health and he lived for 15 years with it until the day he died after falling off a ladder while working on his house. No statistics could have predicted that. Enjoy your life every day, Jarrod, and do your best to take care of your body. That is the best preparation for living today and preparing for tomorrow.

Larry

 

[BDMc]

Jarrod, Listen to what these fine friends are saying. I wasted a lot of time worrying about my recalled valve, instead of living. My valve could go anytime, I could get run over, shot, or die of cancer, and while I agree with Larry that we should all make an effort to maintain the best health we can, life is good. Enjoy it, and don't focus on the what ifs. In just over a month I'll celebrate 26 years since my life saving surgery. I have my aches and pains that come with age, but my quality of life is getting better. I plan to be around for a long time, but if I am not, it sure has been worth it! Brian

 

[Philip B]

Truth?

Truth?

Don't believe everything you read in books.

Many years ago while working for the Feds, I used to spend considerable time in helicoptors. Someone once told me that the more I flew in helicoptors the greater my chances would be to be involved in a helicoptor crash. During my last summer of working that job, I was on board three different helicopters that had to make forced landings due to loading and/or mechanical problems. Now, I wonder what the statistical probability would be of me being on three different helicopters that would have to drop out of the sky rather quickly.

I've also been told that people who are good with statistics can manipulate statistics however they wish to support what they want people to believe.

Worried about mortality? You're not alone. Given what we've been through, I doubt it's much of a stretch to believe most of us think about it from time to time. The key here is to avoid obsessing about it to the point where it affects the quality of one's life.

-Philip

 

[dick0236]

I've also been told that people who are good with statistics can manipulate statistics however they wish to support what they want people to believe.

Worried about mortality? You're not alone. Given what we've been through, I doubt it's much of a stretch to believe most of us think about it from time to time. The key here is to avoid obsessing about it to the point where it affects the quality of one's life.

-Philip

Like Philip says, once this surgery is done, it is not possible too put "mortality" completely out of mind. The "key" is too keep everything in perspective. There is NO way too know when or how our "life expectancy" will become zero.

I also like the nice way he referred to "manipulating statistics". I am more crude....Figures don't lie, but liars figure:wink2:....too authenticate THEIR point:angel:.

 

[robojerry]

Thanks for the kind responses. I think one of the problems is that there is too much misinformation out there. At least I hope it is misinformation; I spoke to a cardiac nurse last year, at a time when I was having a lot of anxiety about what the future may hold as a young adult with a replacement valve, and they said that it was unfortunate that I had had to have it so young and that the statistics point towards a drastically reduced life expectancy in young adults with avr. I think they even mentioned that it was about 16yrs post-op. My doctors (both GP and cardiologist), on the other hand, say that my valve is "sitting perfectly" and that my heart function is exactly that of a young man who hasn't undergone valve replacement surgery, adding that my life expectancy/quality of life will not be drastically effected in any way (at least not because if the valve, cycling through rush hour on the other hand...).

I think my anxiety is at its worst when I get really tired or a little under the weather (like now, for example, we managed to lock ourselves out of our house on Sunday for 8hrs in the rain, we are now both suffering from common colds), and I fell like I can't function like "normal", healthy people my age.Oh, and the palpitations don't help either.

 

[Cooker]

I like what Skeptic49 (Jim) has in his signature ... " don't worry about your heart, it will last as long as you live" ... worry can not add one minute to my life but I am pretty sure it can take a few away ...

 

[Michelle D]

Anxiety is a feeling and sometimes for me when my mind starts racing and my heart starts beating like crazy I just having to stop myself and say "I'm having anxiety, and it's okay, it is a feeling" and most of the time that makes it go away. It doesn't always work but it's worth a shot. I have a hard time trusting my doctors too. Last night I actually had a dream that I was in the hospital and a nurse was yelling at me telling me I was a hypochondriac and there was nothing wrong with me. It's hard being a hypochondriac that actually ended up with a problem after all. It kind of reinforces the phobia. What author has the grave stone that says "I told you I was sick."? I think that would be appropriate for my gravestone as well.

 

[Lynlw]

Thanks for the kind responses. I think one of the problems is that there is too much misinformation out there. At least I hope it is misinformation; I spoke to a cardiac nurse last year, at a time when I was having a lot of anxiety about what the future may hold as a young adult with a replacement valve, and they said that it was unfortunate that I had had to have it so young and that the statistics point towards a drastically reduced life expectancy in young adults with avr. I think they even mentioned that it was about 16yrs post-op. My doctors (both GP and cardiologist), on the other hand, say that my valve is "sitting perfectly" and that my heart function is exactly that of a young man who hasn't undergone valve replacement surgery, adding that my life expectancy/quality of life will not be drastically effected in any way (at least not because if the valve, cycling through rush hour on the other hand...).

I think my anxiety is at its worst when I get really tired or a little under the weather (like now, for example, we managed to lock ourselves out of our house on Sunday for 8hrs in the rain, we are now both suffering from common colds), and I fell like I can't function like "normal", healthy people my age.Oh, and the palpitations don't help either.

Think of it this way. Part of the reason there is so much debate about valve choice, is people need to decide IF they rather go thru 2-3 surgeries if they choose a couple tissue valves, or rather have a mechanical valve to avoid REDOS.
(these are just numbers I chose and not saying how long any kind of valve will or should last, just numbers used frequently to make my point here) Many people HOPE to get 15-20 years out of their tissue valve before it needs replaced. IF having an AVR drastically reduced your lifespan and living 16 years post op was the average, people would NOT worry about how many surgeries would they need if they chose a tissue valve each time and people wouldn't worry about mechanical valves lasting 30 or more years.

 

[daveguy14]

Think of it this way. Part of the reason there is so much debate about valve choice, is people need to decide IF they rather go thru 2-3 surgeries if they choose a couple tissue valves, or rather have a mechanical valve to avoid REDOS.
(these are just numbers I chose and not saying how long any kind of valve will or should last, just numbers used frequently to make my point here) Many people HOPE to get 15-20 years out of their tissue valve before it needs replaced. IF having an AVR drastically reduced your lifespan and living 16 years post op was the average, people would NOT worry about how many surgeries would they need if they chose a tissue valve each time and people wouldn't worry about mechanical valves lasting 30 or more years.

Excellent point, Lyn. It's also tough for us young folks because there is so little information--and statistics--about people our age. That nurse might be right that the average lifespan for the average person with an AVR is 16 years, but that's because the average age is probably around 60 to begin with. That statistic doesn't help a thirty-year-old. There just isn't enough long-term data out there for young people, but it's definitely *not* 16 years.

Also, sometimes the literature refers to "lifespan" as in lifespan of the valve, not of the person.

 

[Michelle D]

Excellent point, Lyn. It's also tough for us young folks because there is so little information--and statistics--about people our age. That nurse might be right that the average lifespan for the average person with an AVR is 16 years, but that's because the average age is probably around 60 to begin with. That statistic doesn't help a thirty-year-old. There just isn't enough long-term data out there for young people, but it's definitely *not* 16 years.

Also, sometimes the literature refers to "lifespan" as in lifespan of the valve, not of the person.

Good point. If I consider my genes I should make it another 60 years but they haven't been doing mitral valve repairs that long. Hopefully they will make a bionic heart that doesn't require battery packs by the time my heart is ready to go. But who knows I might get hit by a bus or fall off a ladder before I need to worry about my heart.

 

[nate_c]

It seemed to say that after surgery there was a 1% mortality rate per year cumulatively (or words to that affect).

I'm no statistician, so please correct me if I'm thinking about this wrong here, but a 1% mortality annual mortality rate (if that's even correct) would be surprisingly good. The average US mortality rate seems to be just under 1% per year for the general population (you can find the exact numbers on statehealthfacts.org, if you're so inclined). I actually would have expected a much higher mortality rate for an "average" valver than 1% per year, given the average age of a typical valver.

Hang in there, Jarrod. I'm in my early 30s and just had my aortic valve done (congenital defect, like you). I've known my valve was a problem since I was 11. It's frustrating, for sure, and no fun, but I still expect to live a full, healthy, active life, and over the last 20 or so years of monitoring this issue, I've never had a cardiologist or surgeon try to tell me otherwise.

 

[hook]

Mortality rates are often BS. You have to consider the sample size of patients where this information was derived. Most people who need valves are indeed later in life, many very later in life. When you consider the age of these folks I understand the numbers.

To make a conclusion for you, there would have to be a study of healthy people under 30 who have had a valve replaced. I would think you are in good shape. Putting it off may be another matter.

Now that I have had my valve replaced, it just isn't a big deal anymore.

 

[dick0236]

I'm no statistician, so please correct me if I'm thinking about this wrong here, but a 1% mortality annual mortality rate (if that's even correct) would be surprisingly good. The average US mortality rate seems to be just under 1% per year for the general population (you can find the exact numbers on statehealthfacts.org, if you're so inclined). I actually would have expected a much higher mortality rate for an "average" valver than 1% per year, given the average age of a typical valver.

.

I fully agree that a 1% annual mortality risk is great....and acceptable for me. This initial post referred to risk as cumulative.....1st yr=1%, 2nd yr=2%......43rd yr=43%:eek2:. The statements of some of the information being published, that the risk is cumulative is statistically incorrect.:tongue2:

 

[Jkm7]

We can spend whatever days any of us have worrying about how many days we have or we can enjoy those days.

Who among us has any guarantee when their 'number will be up'?
That is not to say I'm anxiety free or in denial that serious heart surgeries don't have serious repercussions, sometimes. But what is the point of having the surgery to only worry the rest of our days away?

 

[Rick]

I agree with many of the comments about how to handle the emotional aspect. Its hard for me too. I just wanted to comment on the statistical calculation. A 1% is great news to me (I thought it was around 2%)....but the way I think you need to do the math is 99% of survival each year. Hence you do .99 raised to the number of years you want to calculate survivability. In this case 99% raised to the 30th power is 74%, a 74% survival rate after 30 years. 50 year = 60% survival. This does not take into account the fact that the risk increases as you age. Anyways, the math actually is not soo bad....but what matters more is learning to live with it without it detracting from the moments that you are actually alive and well --- My own self-therapeutic thoughts: if I cannot enjoy these moments when healthy, then when are you going to enjoy life? Anyways, hope this is helpfull or comforting to someone.

Rick