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What do you wish someone had told you before Transplant?

TinaBaliveTransplant Patient
Updated May 29, 2021 in General

I came from a background of being different & sick all my life. So when "transplant" was mentioned to me, alongside the possibility of living a "normal life" afterwards, I honestly didn't realise what "transplant normal was".

I learned about the grapefruit early on, but that didn't phase me as I didn't like eating it anyway. I was also aware that contact sports were out of the question, again that was no problem for me.

But no one ever mentioned the medication side effects to me or the restrictions I would have to live with in regards to socialising.

I wish someone had explained the difference between Normal & Transplant Normal to me.

Is there something you wish you'd been told before your Transplant?

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  • ChristopherTransplant Patient

    I wish someone would have told me it takes a long time!! It’s a long process of many, many blood tests and medical testing. It was unreal. Before you get approved for a transplant your ENTIRE body from head to toe is checked over. I never realized how long and drawn out the process is.

    The transplant process is a long and amazing journey that tests the limits of the human strength and courage. It’s definitely NOT for woosies or lazy people. I will never forget all I went through before receiving my new liver. It requires a lot of commitment and faith as well as emotional, mental, psychological, and physical endurance. I found it to be a very long and difficult process but it was well worth it at the end. If a person can handle transplantation, you can conquer anything you set your mind to. It is one of life’s greatest challenges and among the reward is the GIFT OF LIFE itself. It’s definitely not for the weak minded or faint hearted. I’ve been pricked, prodded, probed, needled, tested, etc. Before I had my transplant I was afraid to go to the doctor and always put it off. Since, going through this whole ordeal, I’m no longer afraid of doctors or going to the hospital and I now look at my doctors and nurses as my very BEST FRIENDS now.


    Thankfully, I was only on the waiting list for 6 days and I received my first call and only 10 days when I received the final call.

    May 16, 2021
  • ChefAmandaTransplant Patient

    I wish I was told how toxic the immuno-suppressant drugs post transplant really were.

    After being a compliant heart recipient of many years and taking my medication as prescribed it would result in complete kidney failure and me needing dialysis. I always knew of a possibility of needing a second heart transplant but I never thought another organ would be needed.

    May 17, 2021
  • AliEm14Transplant Patient

    I was also sick all my life. When I finally did get a transplant going from GSD normal to transplant normal felt like a breeze. I didn’t have a normal life ever. I had a dying life and now I have a not dying managing transplant life. I knew surgery recovery would be a pain in the butt, which it was. I wish someone told me how long it would last, cause it definitely wasn’t 3-4 months. My diet was way more restricted pre transplant so just not having grapefruit feels so easy. I never played sports before and now I get to be more active. Pills twice a day as opposed to every 2 hours is so easy. In a lot of ways it felt and does still feel like winning the lottery. One thing no one told me that I wish they had was immunosuppression side effects. I’m slowly adjusting to those and adapting to make them fit my life. And also the mental game has shifted a lot for me. Better mental support throughout all kinds of chronic illness and transplant should be mandatory in my opinion.

    May 17, 2021
  • AviTransplant Patient

    Immuno side effects, explained, so you can understand why things happen.

    May 18, 2021
  • JeanmarieTransplant Patient

    Medication side effects have been the thorn in my side for 15 years! I know its hard for the doctors to predict how your body will react to the medications. But I was so excited and thought I could eat anything post transplant until... prednisone. I wasn't on prednisone until my first rejection. But I was surprised how overweight I got. The bright side is, it has forced me to really take care of my health by paying attention to what I eat.

    I was really sad about green tea. I love tea! But I have learned to just live with all the other teas instead.

    May 31, 2021

1 - 12 of 12 Other Answers

  • TinaBaliveTransplant Patient

    @ChefAmanda I'm so very sorry that you had to go through that! Do you know which drugs specifically caused your kidney failure?

    June 12, 2021
  • TinaBaliveTransplant Patient

    @Jeanmarie you have taught me something here today. Thank you. I didn't know that Green Tea was a no go. I'm actually a huge fan of tea, except for Green Tea!

    June 12, 2021
  • ChefAmandaTransplant Patient

    @TinaBalive My immunosuppressant drugs such as Tacrolimus and Mycophenolate.

    June 12, 2021
  • Mia2sheaTransplant Patient

    So Sorry to hear about your kidney failure, that sucks. I am in the process of getting listed now for liver trans. and I was told by my Dr. that it will mess up my kidneys. How long before your kidneys got messed up by the meds?

    June 18, 2021
  • ChefAmandaTransplant Patient

    @Mia2shea Thank you! Honestly I was blessed as I had 16 years post transplant before my kidneys started to fail.

    June 18, 2021
  • Golfnut2043Transplant Patient

    I had my transplant on june25 2020. At Houston Methodist At Medical Center I had my transplant did great in hospital till July 3 sent me home was walking slow painful but walking with a little help I was on tacrolimus ? Got home about 3 hours starting seizures got me back to hospital changed to cyclosporine I was in there 8 days got so weak left in wheelchair could not eat or walk the shakes were so bad. Went from wheelchair to walker to cane in about 2 months with physical therapy. For almost a year now my med have been ok but different people different meds I been a crazy year but I am so much clear headed and feel great God bless the donors and their family. And doctors and the wonderful nurses I had Thanks all

    June 21, 2021
  • StephenCFTransplant Patient

    That breathing would be more difficult the first few months post transplant than pre-transplant. Definitely didn't sign up for that!

    If you're a bit small on the weight side I highly recommend eating every and all pizza you can stuff in your face before the call because whatever you think skinny is, wait until a few weeks after transplant.

    The chest tube pain. Not the incision. The accursed chest tubes.

    I think most importantly, recognizing that not all transplant centers are created equally. This is your life. Research and find the center right for you. For instance, this is a great resource for prospective transplant patients:


    We ended up moving because we didn't trust our previous center to keep us alive post transplant.

    January 13, 2022
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