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  • I am going to royal PAPWORTH on Thursday for my 2 year check it's been a rocky road but I hope and pray I have many more years

  • Hello Everyone,

    My husband Al received his Heart Transplant on August 13, 2019. We are 1 year post transplant and so far so good. He is still getting acclimated to the medications and trying to recover his energy which has been an extremely slow process. As his full-time Caregiver I am constantly researching and trying to learn as much as I can about his Hereditary Cardiac Amyloidosis which is what lead to the need of a Transplant. So glad I found this group and I look forward to reading and learning as much as possible.

    Thanks, Deborah

    • I was in PAPWORTH having my heart transplant around that time was still in as a patient in August I have had this since I was 33 if I can help with questions please feel free to ask  john

  • Do you have any diet advice for others?

  • Hi it took a long time to connect with you all . Wanted to let you all know l am 21 years out with my heart transplant. It comes each day with a lot of things . Contact me and we can share ok  Ivy 

  • Hey Guys! 

    I dont post much, but I read a LOT! My husband had his heart transplant July 2, 2014 - so we are almost 5 years out. Everything has been going wonderfully for the past 5 years...until now. He works nights, in security, and came home this morning with his legs so swollen! He has been sleeping in his recliner all day, but they are still really swollen. We are contacting his Drs first thing in the morning, but I am wondering if anyone else has had this issue? I am so worried. Not really shirt of breath, but his legs are really swollen. I havent seen them like this since he was in severe heart failure, pre-transplant. 

    Thanks for any replies with experience here..rejection is always in the back of my mind.

  • Hi everyone! I just had my 13 year check up and everything is going well still, but around this time every year I start having horrible anxiety. I am so worried about how much longer things will still go well, what will happen when things get bad, have fear of dying, etc. Does anyone else feel this way? I need some advice of how I can focus more on the quality of my life and not the length, however long or short it may be. Thanks everyone ❤️❤️

  • Please Click and watch it may save a life.

  • I had my transplant at Papworth 9 years ago and have been extremely well since. At my 6 monthly check up last week I was given the news that it is starting to reject,  mainly due to high blood pressure.

    As I care for my wheelchair bound husband who has suffered strokes as well as has numerous other medical problems, this is going to cause major disruption to both our lives.

    I really have no idea where to start, or what to do.

    If anyone has had similar problems please would you share your solutions with me?

    Thank you in advance, and the best of health to all of you.

    • I am also 9years out. This is concerning  Let us know what happens. I will keep you in my prayers. 

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