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  • Good morning!

    Anyone out there living with Coronary Artery Vasculopathy?

    One year out on 3-11-2018. Just completed 1st annual eval. Did e extremely well until day 3,when this issue raisedised it’s ugly head. Have not found anything particularly encouraging yet. Won’t get to see Dr. till next week. In the meantime I am concerned as to % present  vs statistics I’ve read in medical articles.

    I wanted to reach out as I am wondering what is in front not of me in what appears will be round 2 for me.

    Thank you.

  • 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

    • Congrats Jeremy, how are you doing?  I had my HT on 12/5/16, at UCSF in San Francisco.  Got a heart from a 26 yr old guy.  Try not to think about the process too much, but each day the miracle becomes greater and greater as I become more and more active.  Did an 8 mike hike last Saturday, uphill, in canyons etc, no problem.  All you can do is smile, smile, smile!  Each each day.  Cheers!!  JB.

  • 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.
    • So I have since my first response been proven wrong and a wonderful neurologist explained to me why my feet pain started when I woke up and had neuropathy which I never had prior to transplant! Lookup critical illness polyneuropathy. It happens to ICU patients that are critically ill and in my case  high doses of steroids caused my blood sugars to go sky high! I dealt with ketoacisosis because of it. What happens is your body is thought to produce a systemic inflammatory response that effects peripheral nerves and that why my pain was rt away and I had neuropathy that nobody could explain . So now when sugars are out of wack it’s like fueling a fire cause you e instantly been progressed to the 20 mark of someone with diabetes!

    • 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!
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