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  • My daughter had her heart transplant Dec. 29 2013.  During our time in the hospital waiting for her gift of life, I kept a daily journal.  Since then I have turned my journal into a book.  "Strength in a Heartbeat", Diary of a Heart Transplant.  Reason to create the book, I wanted to help other families going through the same journey, something they could relate to.  They are not alone.  It is a lonely life living in a hospital.  We spent close to 18 months, pre-transplant and post-transplant. Please check it out, and share.

    Lynne Robitaille 

    Lynne M. Robitaille
    Author, Organ Donation, Heart transplant, story of heart transplant, donate life
  • i had my heart transplant 11-24-1994 from a 24yr old male at Temple University Hospital

  • So I am almost 4 years out and my feet hurt everyday. My feet did not hurt before transplant. Some of it is neuropathy but gabapentin doesn't help I take 1800mg a day. Also been to the podiatry doc also.
    • I'm assuming you have figured out the answer to your feet by now? Your neuropathy is medication induced. Research your meds that's what I did cause my feet hurt so bad I had no quality of life. I did my own research and found a few of my meds even tho it's a small chance have been proven to cause medication induced neuropathy! Research your blood pressure med..... I was on an old style one called hydralazine and it's number one on that list along with a few other bp meds. Another is colchazine which is a gout med and if you get gout now and don't know why it's caused by your diuretics. And Tacrolimus is another med that causes feet pain. They switched me to sirolimus and they switched my bp med and got off the other and just like that after 3 years of being 90 percent crippled with neuropathy within 2!months I was almost 70 perc pain free and back to life!!! Still have damage and numbness from it but it's tolerable and I can do what I want now. Sometimes you have to take your health care into your own hands!!
  • Hi everyone. I am 22 years old from India. I had my heart transplant 6 months ago. Anyone from India?   

    • Yes, I am Johnson George 58 yrs ,I had my liver transplant 3 years back in CMC Vellore.
  • New to the site looking for others who have had dual heart-lung transplant. I am pre transplant and looking for information and patient experiences! Thank you!
  • Hi everyone, I've had my new heart for 6 months now after 2 LVADs. I'm starting to feel almost back to me before all my surgeries and medications. I still have slight hand tremors, but they seem to be going away. I'm still waiting and hoping for the day I get to thank my donor family. Can anyone tell me how long does it normally take for the donor families to contact the recipients?
    • Almost a 14 months for first contact for me. I understand the FIRST move is made by them since they are dealing with grief. In many cases the recipient may never be contacted

      Now I am almost two years and expect to have a face to face next month when I travel 600 miles back to my TX center for the two days of two year tests
    • Still haven't been contacted after four years so good luck to you. I was told the family did accept my letters but they've never given me anything to go on...... really sucks
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