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How long did you have to wait for a heart?

My husband has been on the transplant list for 10 months but they haven't been getting any donors. Hes on a constant IV drip and we were told the only people higher on the list than him are those who are hospitalized. I realize waiting is hard.....I'm just wondering about how long others have had to wait. Since they haven't been getting any donors where we are I'm also wondering if we should go somewhere that the wait time is usually much shorter like Cleveland.

My fear is he will get sicker and sicker until he is no longer eligible for a heart if much more time passes. .

How long have some of you been waiting?

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Replies

  • Hi Mary

    Sorry to hear that.  I am doing  well physically. Now I must get my mind to accept all that happened and even after a year some days present a challenge.

    I almost had the LVAD but then the drip kicked in.  Some people in my support group have the LVAD and they are doing well. It is such a process.  Some of them, once healed, have received a heart.

    So stay strong, keep the faith and you all will be in my prayers.

    Paul   

    • Thanks so much!

  • Hi

    My name is Paul.  I was on the list for two years. I was on the list in New York City for one year and that list was to long so I transferred to a New Jersey hospital that had a shorter list. I was able to transfer the time over but I still waited another year for the match.

    I was also on the drip for a year and a half. I know it is tough,  such a roller coaster ride. Some people that I got to know at the hospital waited longer than me.  Talk to your doctor or team. If your husband gets worst they may put him in the hospital.  He will jump up to 1A and they will send out a search for a donor.  You can find out where he is on the list if you really push your transplant team.

    Keep the faith, do everything they ask.  Take the pills, exercise the best he can. Watch his diet.  Show them that he will be compliant, they love a good patient and it will only help him through recovery

    Good luck and stay positive, (I know how tough that is)

    • Thank you for the reply. I hope youre doing well with your new heart!

      Things have changed alot since I last posted. My husband was hospitalized and had to have an LVAD. He was very critical and after the surgery stayed another month in the hospital. He came home in a wheelchair but slowly but surely hes getting better.

      When hes well enough and gains back enough weight he will go back on the waiting list.

  • Hi Mary - I waited with a LVAD 40 months, and I was hospitalized in the end for 90 days after I broke my LVAD.  I live in MN and in the end was sent to CA for a heart.  As Dave and others point out hearts are allocated to the sickest based on wait time, blood type, and body size.  I was #1 in MN for many many months before I was moved to a region that did a higher volume of transplants simply because viable matches were not coming available.  If your husband is stable and you are confident that he is getting the care he needs then you should be in good hands.  However, as others will tell you, you must be your own advocate in this process.  No apologies.

    • You really had a wait!  I hope youre doing well.  We are at 1 year on the list and that seems like forever. They say he is #1 here so hopefully it wont be to much longer.

      Good luck to you!

  • I waited 5 months after being placed on the transplant list in Miami for a heart and both lungs. When they called me, they called two other patients who needed only one, either a heart or lungs.The only way I could get xplant is if both organs worked. They did, and two families went home sad. The next day they called back the guy who needed a heart and he received his miracle. Hold on . Don't lose hope. Prepare to live.

    • Thank you!! Sure hope you are doing well.
      We just moved close to the hospital due to his health. Hopefully it won't be long now!
  • I waited in John Hopkins Hospital in Baltimore, Maryland for 44 days. I stayed in the hospital from July 2,2015, received my new heart on August 16,2015 and went home on September 3,2015. I had to be in the hospital in order to be at the top of the transplant list. My Heart Failure doctor and Surgeon are excellent. I don't know how close Maryland is to where you live,but I would highly recommend Hopkins.
    • Thanks for your reply. I'm so glad you got your transplant and hope you are doing well.

      We are in Texas so its a long way! We are finally getting close here I believe. They wanted to keep him last week after spending a week with breathing problems but he wanted to come home. We just rented a temporary home 4 blocks from the hospital so if he still needs to go in and stay I have a place nearby.

      Thanks again, I hope all is good for you.

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