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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

  • I was lucky, waited 8 months. Had an LVAD to bridge that time gap until my transplant on 12/6/16. The LVAD did wonders for me. I regained my strength and was able to do most things within reason. I did not feel hampered by the LVAD. Relax and let the LVAD do it's thing, which is to get you strong for your surgery. I had no problem with my surgery and I attribute it all to the LVAD and the great care I received from my docs. I'm 64, received the heart of a 26 yr old. Feel great, no problems, no infection after 4 months. Be strong mentally. Good luck!!
    • Thank you for your reply. I've been so busy I haven't had a chance to get on here. My husband got a heart a month ago and is doing great!! You're right. This surgery went so much easier than the lvad and he's recovering well. Good luck to you!!
  • 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!
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