Liver — TransplantLyfe

Liver

Life on Hold

TaylorCTransplant Patient
Updated May 20, 2021 in Liver

Ever since I was diagnosed with liver disease, and found out I was being put on the transplant list, I have felt like I have had to put certain things on hold in my life, and especially for making future plans. Example, going back to school, furthering my career, buying a house, just normal things that I wouldn't have expected to feel like I have to wait to do or even consider until I get my transplant, and have a better quality life. So I was wondering if this was just something I've been struggling with, or if anyone else has sort of felt stuck in limbo waiting to plan their future around their transplant, and if you have already received your transplant, was this something you felt before you received it as well? Have you been able to do things now that you didn't think you could go before getting your transplant?

1 - 21 of 21 Replies

  • DebTransplant Patient

    I too went through the same thing although I’m 60 and have already done many of the things you spoke of but I was afraid to go on vacation, make any plans for the future even holidays were not the same. But I did my call and yes you will get that call and as you recover you will feel so much better and will be excited to live your life to the fullest. Best of luck to you.

    April 12, 2021
  • SigEpSinfonian98Transplant Patient

    I am in the middle of feeling this way right now. My best advice is to just jump out there. It will terrify you but the other side of it feels so exciting.

    April 12, 2021
  • JimGleason_TRIOTransplant Patient

    Taylor, you ask a great question that many of us have had to face. My personal outlook and positive experience with that outlook both before my failing heart that led to a heart transplant now 27 years ago is to accept that one, we don't know if we have one day or many years ahead of us, so assume the latter and move forward with whatever energy/passion that your health situation may allow, living each day to its fullest (esp with the support of that loving dog). Second, in mentoring many patients in visiting them while they awaited their transplant gifts in the hospital, I shared that there was no way of knowing (outside a scheduled living donation of course) when that donor organ might come, so stop looking at the calendar. Instead, assume that the outcome will be, as most experience, very successful, allowing you to get back to a 'new' normal post transplant. Given that outlook, my advice has been to take out a notepad and begin writing down (important to actually write it down!) your goals/plans for when you have recovered from the transplant. For each, let your imagination support that dream, adding specific actions needed to accomplish that goal. That activity will replace those other concerns (all valid) that are filling your mind as you wait for that liver, with this wonderful vision of what is to come. It works! Try it and post back you experience with that change of mind outlook/concern.

    Our prayers go with you!

    April 12, 2021
  • Sdey0522Transplant Patient

    Indeed @TaylorC , what you're experiencing & feeling is normal. However, #nevergiveup, have #infinitehope and stay positive! Rest assured, once you receive your #giftoflife you'll be able to do most things. 👍🤞🙏

    April 12, 2021
  • TaylorCTransplant Patient
  • KarinTransplant Patient

    I understand and only advise you to focus on the day and then the next and soon you will be through this hiatus and ready to continue your life again!

    April 12, 2021
  • mikemTransplant Patient

    @TaylorC and @Karin Taylor - I understand exactly what you're going through. While I have made good strides in my career, I feel like every time I take on step forward I take two steps back (haha, catch the Paula Abdul old school song reference there, I may have messed up the lyric). I definitely had challenges in college when I needed a transplant. For real, while it's easy for those of us who have been transplanted a long time to give positive advice, I try never to sugarcoat. I've been stuck, and I get stuck a lot. Sure, having a transplant gives us some perspective, but I also think we are still absolutely struggling with many of the same things peers do (non-transplanted) but with this extra added weight of waiting for that organ, having a transplant, etc. These days, each setback hits me really hard. Sometimes I think they hit me harder because I am relatively health now. I'm happy to connect and talk if you want to do so. Recently it was my mom's birthday, and she is my living donor. She passed away (a number of years ago). Her birthday hits me very hard.

    April 12, 2021
  • AliEm14Transplant Patient

    @TaylorC i definitely felt this way. I was on the waiting list for almost 2 years. And oddly enough looking back on that time I made such great memories. Maybe because I didn’t know the future or if I would survive. I spent more time with loved ones, I camped out on the balcony to have a nap in the sun, I watched movies in the middle of the afternoon. That waiting time felt so rich to me once I was able to flip my perspective. And now, being post transplant, I can say every second was worth it. My life now is also beautiful and rich in new ways. Waiting is so hard but one day at a time. Focus on being present and making the moment great. The act of love begins in paying attention

    April 13, 2021
  • JeanmarieTransplant Patient

    Yes! I still do this from time to time. I have to catch myself and turn my thinking around. It might take us longer to accomplish goals or we might have a harder time multi-tasking but I think its important that we always continue to work on our goals. Even if we are just taking small steps forward. Maybe going to school part time instead of full time. Or just focusing on your career.

    I think it is so important that we continue to live our lives going forward as much as our bodies allow us to. It also helps with our mental health. When you have a chronic illness and transplant you will always be battling something and find a reason to put everything on hold. I've had my transplant for 15 years and I have found reasons to put things on hold. For instance: My body getting used to meds, rejection episodes, hospital stays etc. So I try my hardest to not put things on hold. Instead I just work toward my goals a little slower.

    April 14, 2021
  • AliEm14Transplant Patient

    Yes @Jeanmarie I’ve found that taking breaks but not quitting or putting life on hold is so significant. Have a bad day, don’t do anything for a week, but don’t stop. You may have to take a different route to get there but you can still get there

    April 14, 2021
  • mikemTransplant Patient

    I kind of wish I had gone to school part-time for a period of time while in college

    April 14, 2021
  • AnitaCare Partner

    @TaylorC Its normal to feel the way you feel, but as others have already shared their feelings here, don't stop, go with the flow as long as your health and treatment do not suffer.

    I have met many transplant patients, many a times there is a temptation to put off the transplant, as the liver is a somewhat treacherous organ - it will surprise you with good days when you will think do I really need a transplant ... but these are not reasons to put off the transplant decision.

    However be rest assured that post transplant within a few months life will be completely normal , you will be able to do all the things you wanted.

    All the best.

    April 19, 2021
  • KarinTransplant Patient

    @mikem i hear you - my dad is still alive but each time he gets sick or does something placing himself at risk - I worry more than I would if he were just my dad. I also agree on being stuck - I worry about losing my organs (again), and then not being so lucky this time over! I worry about my vulnerability and how that is perceived to others but most days I try to just push through and focus on the next step - enjoying the now only seems to work when w my daughter!

    April 20, 2021
  • Jazmin77Transplant Patient

    I definitely felt this way while waiting for my kidney transplant, I sent 5 years on dialysis while my life stood still and it feels like everyone around you is moving forward but you can't. Take things day by day and remember even making it through a regular day is a huge achievement when our in this position. It will always get better, soon enough you'll get a transplant and these feelings will just be a memory.

    April 21, 2021
  • [Deleted User]Transplant Patient
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    April 21, 2021
  • mikemTransplant Patient

    That's amazing @Doublelung . Thanks for sharing that.

    April 21, 2021
  • AliEm14Transplant Patient

    I read an article this weekend and while it wasn’t specific to transplant it got me thinking. When hit with a chronic illness diagnosis our first thought is usually to go back to normal as fast as possible. With transplant it’s get the transplant and life will go back to normal.

    except there is no back to normal. There is no life on hold. This is life! It’s trying to fit into something that doesn’t exist anymore. This is life, and it’s happening now. The old thing has burned and you can either lament about that or build something new on top of the ashes.

    April 27, 2021
  • AnitaCare Partner

    @AliEm14 how amazingly true. what's in front of you is THE normal. when you stop comparing/resisting you become normal.

    April 28, 2021
  • bhameisterTransplant Patient

    That is so true with life pre and post transplant. It is just a new chapter in life and a "new" normal. My song since Day1 (going into my primary care doctor with yellow eyes and skin) is Chapters by Brett Young. You just have to turn the page and start a new beginning in life.

    April 28, 2021
  • AliEm14Transplant Patient

    I've never heard that one! I'll have to listen to it, music is so big for me. I always do life changes by Thomas Rhett. It's true, you never know whats going to happen. Plans never work out anyway, so just get on board and get ready

    April 29, 2021
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