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Life expectancy after heart transplant

I've been told by my transplant doctor that the average life expectancy after a heart transplant is 13 years, some people as long as 20 years, some less.

As I am 53 years old, he suggested that I might like to wait as long as possible to provide an overall longer life.  I currently have a ventricular assist device (VAD), so I could probably wait but am anxious to be rid of the VAD and living a "normal" life.  I'm not sure whether living an extra year or two in the end would be worth the trouble of struggling with this VAD now and being somewhat exercise limited in my younger and more productive years.

What have your doctors told you?

Do you think people who are relatively young like me have a greater chance of living 20 years, than say someone who was perhaps 63?

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Replies

  • I was transplanted in may of 2000 and am doing great. I started out on an LVAD and waited 6 months before I got my new heart. I spent 9 years working with transplant patient at Duke Hospital and run into patients who where a least 25 years out. The Doc is not telling you the truth. Things are changing so fast in the field of Heart Transplants that there is no valid data on life expectency. Being on a VAD is just a stop gap measure.The VADs have a history of failing and causing blood clots. GET your transplant ASAP. 

    Morton Jerry Roth

  • When I was transplanted at age 40, they were talking about a 10 year window............that was over 26 years ago, and while the problems are starting to accrue, I still get out of bed in the morning and bless the day.

  • I've definitely decided to go with the transplant now, ASAP.  Better to have a good life now while I'm young.

  • Excuse my frank comments -- it's the meds speaking.  What???  Choose to stay on an LVAD pre-transplant to prolong your life?  Sounds like your doctor is like my surgeon -- he deals with people better when they're unconscious.  We're talking about living here.  Do the wait for the transplant, do the post-transplant recovery of strength, then start living again.  I'm 58 and 18 months out.  I'm back at work (in an office), digging and working on the yard on weekends, sexually active, and playing the tuba again.  And I'm going to live a lot longer than those statistics, by the way.

    This LVAD stuff reminds me of a character in Catch-22 who liked spending time with boring people because it made time pass slower so it seemed like he was living longer.

    I just noticed your post was from January.  Hope you've changed your mind since then.

    Here's an anecdote that means a lot to me.  The world famous drummer Buddy Rich had a heart attack (probably in the 1970's).  His doctor told him he'd die if he kept playing the drums.  He replied he'd die if he didn't.

    You can't compare the "records" established over the last few decades with what's going to happen over the next few.  We're talking 2025 here.  "Heart" will be just another app on your cell phone.

    Anyway, you know how I feel.  Best of luck.  Dean

  • My docs said to keep my own heart as long as possible because life expectancy does decrease after transplant. However without tranplant there would have been no life. I was 52 at time of transplant. I'm hoping for at least 25!!!!

  • dr wikipedia tells me that the current record is 30ish years (that particular recipient died of cancer). if my heart lasts that long, i will be about your age when i need a new one, which is a whole 'nother can of worms.

    as was said before, advances in surgical technique, donor-recipient matchmaking, post-op meds, etc have had an impact on the life expectancy. not to mention the patient's general health and adherence to medications/lifestyle after the transplant.
    no reasonable surgeon would perform a heart transplant if they thought it would diminish your quality of life, and if you say you're struggling with the VAD it might be worth it to get the surgery sooner rather than later so you can enjoy life without machinery.

  • Hi Ken

    This has played on my mind too, as I have received a transplant at the age of 26 years old.  There are ALOT of factors to think about - ultimately it is down to chance though (I say this because I have been on the wrong and right side of statistics and take them with a pinch of salt now)

    Here are a couple of the things you might like to consider that people mentioned to me:

    - The heart centre you choose - for example where I went has an extremely good record, and the surgeon I had is especially particular in accepting transplants - but different hospitals may have different standards and different levels of care

    - Your general health and how good you are with your meds.  I've been told this is a major factor in survival rates etc - it beggars belief to me but some people aren't strict with meds or their health as they want to pretend they're 'normal' and ultimately end up paying the price

    Also one last thing - it's hard to compare as transplantation is relatively new really - what I hope is that I'm from a generation where the transplant will last longer, because the meds have been developed and science is always moving forward.  So because the average now may be 13 years this could change.  (I'm trying to be positive can you tell haha)

    • Hi Rach,

      Thanks for your reply.  I agree with everything you've said.

      I'm going to one of the premier heart centers in the U.S.  They do a lot of transplants and are also very picky about sizing your heart right, and making sure you don't have other health problems that will affect your longevity, etc.  

      I'm in good health otherwise and am meticulous about my meds even now before my transplant (I take a lot of different ones).

      I agree that transplants will last longer in the future.  It's not just that the heart goes bad at an average of 13 years; there are many other reasons why you might die.  Remember that the average years applies to all ages.  If you get a transplant at age 60 for example, you may die of cancer, a car accident, the flu, or a thousand other things.  I think that you have an excellent chance of living a lot longer than that average.  

  • Ken Great Subject. One most do not want to talk about ? I really don't believe they ever gave me any info on That when I got my txp ?But it was a long time ago ! It will be 16 years for me very soon.

    What I do remember is them tell me what numbers will survive 1 year and then 5 years and then 10 years.

    I too had a LVAD. I was 42 when I got my txp. And yes not so much your age but how healthy you are  when you receive your txp will make a difference ? Not sure why you are limited to excersie with your lvad ? But I would talk to your team and see how much you can do ? And do it ? I walked on treadmill when I had mine. Usually 3 times a week and about 30minutes each time. It makes a big difference. My center sent all patients waiting to rehab while waiting. But We all did wait in the hospital then also ? Difffernet than now since most wait at home !

    I just meet the oldest living heart transplant from my center. He is 29 years out ! About my age ? but did get his heart 13 years before me. So there ?

    Search internet there are plenty of info there on this topic also

    Good luck on your wait. and let me know If there is anything else I can do for you for you I used to visit pre txp's waiting in the Hospital where I live.

    • Thanks everyone for responding.

      hearttxp - I'm just exercise limited because I'm only 2 months out from getting my LVAD and I'm still weak.  Before the LVAD I was on balloon pump for a month and unable to move much in the bed.  My doctor wants me to now join a rehab group and I plan to soon.

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