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Freshly on the list

Hello, My name is Meagan and I have just recently been placed on the list to receive a liver transplant. I'm doing my best to deal with the whole idea but I feel that I need some insight from others who can relate. My family is very supportive, I just feel like they couldn't possibly understand what I am going through. I know that they are going through their own issues with it and dealing with it in their own way, I do not want to add to their stress. Any help dealing would be helpful. I don't even know how or what type of help to ask for. So many emotions going on!

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  • You will get through your surgery. You can do this! You will go through every emotion and more than anybody would think possible! But even knowing that is unbelievable and does not help getting through all that. Now, Being alone with your self and accepting yourself will help. Exercise, prepare your body, as well! Eat well, do what you’re team tells you. Read! Read, information about your medication and vitamins. Read about, anything your curiosity is nagging you with. Try daily to Center yourself. Even when your worries keep you from sleep. Keep your sleep time, for sleep. Save your worries for the day. And pray with love and peace in your heart. And smile, be positive, You Will be grateful one day! To smile, and say you did it too!
  • I had a live liver transplant but just being diagnosed with ESLD  overwhelmed me until I reached a place of acceptance.

    I'm an artist and didn't stop painting.Do what you do to express yourself.

    Also, I walked as much or as little as I was able to do and feel the exercise helped me both post and pre-transplant. Our bodies need to move, even slow gentle stretching.

    Good luck

  • Hi, Meagan, 

    I really relate(d) with what you are saying. I had my transplant last year, but I am here if you wanna chat because I know all about that confusing mix of emotions. I was so grateful for support, but to some degree, there was never enough of the right support. I really needed someone who understood what I was going through, but I couldn't find anyone... it was a bit isolating. Can I ask, do you know what your score on the list is right now? 

    -Katie :) 

  • I had been taking Interferon prior to my transplant in Oct. 1999. So it was not a surprise for me when I was listed. I already was interviewed by the treatment team. When I found out I was listed I exercised every day to make my body strong for the operation. Of course that affects the mind in a positive way. Most people and even medical people know nothing to very little about transplants and transplantation. Congratulations on being listed! It's been 18 years for me and I hope to make it to 19 years. Best of luck!

  • Hi Meagan,

      Congratulations on being listed for liver transplant.  You are going to do great and feel 200% better after the transplant.  As I've often heard and quoted, 1 day after transplant is better than all the years before transplant with liver disease.  We all experience different levels of pain, but really, they cut so many nerves when they open you up, that hopefully you will be off the strong meds within a week or so and then just taking Tylenol to manage the discomfort moving forward.  

      One key for me post-transplant is to try and walk about 15-30 minutes those first weeks especially after you are released from the hospital.  So much scar tissue is forming and the more you move the better you will feel.  Just sitting around though makes for some pretty good discomfort.

      I'm sure your family will be there to help you, but if your surgery goes textbook without any complications, you will have so much energy that your caring family will have to make you slow down!  Just listen to all the instructions they will give you after transplant and follow them to the T.

     I wish you well and look forward to hearing when that call comes in for you!  Good luck!

    Mark
    Liver Transplant 2015

    • Marks words are true.  But oddly, I felt no pain at all after my day in ICU.  Never even needed an aspirin!

  • Steve's remarks are spot on.

    I would suggest looking for a transplant support group. We have pre and post transplant group in Oklahoma City.

    I know for a fact that it has played  major role is assisting people.

  • Welcome to TF!  

    I'm sure the TX team will guide you through.  Mine are the best.  Angels all.  And your family sounds like they are there for you.  Good!  Cause you'll need them.

    Some unsolicited thoughts:

    You may be on the list for quite a while or get a liver ASAP.  Stay ready.

    This is a marathon, not a sprint.  It is a journey that you'll be on for life.  Some things change in the short term while healing and getting your meds squared away, but just a few weeks post TX things start getting better fast and then eventually things get back to pretty much normal.  You take some pills, you are careful not to get the flu, etc.  

    Don't stress.  You cannot change this. Like being pregnant:  It's going to happen in it's own time and all you can do is prepare and look forward to getting it done.   It's fresh and unknown so it seems daunting, but it's not.  You are rock star super hero that will walk through this like a stroll in the park on a cool afternoon. 

    Prepare.  Get (or keep) your heart and lungs in shape with exeercise.  Eat well. Sleep well.  Pamper yourself.  

    Talk to your team about getting imunization shots now that you won't be able to get after the TX. Wish I'd done that.  Shingles and a few others would be good to get now if they'll let you.

    Remember that YOU are blessed!  You get to live.  You get to rely on your family, to grow old and care for your loved ones in the future, and see your life unfold.  Focus on how blessed you are!  Rantings of a crazy man?  No, you'll look back in 2-years and KNOW how blessed you are.

    Let us hear from you.  Ply with questions.  It's what we do! 

  • Welcome Meagan to Transplant Friends!

    I am glad that you found us. I am happy to see you are open-minded and interested to seek support. Sounds like you have a very healthy attitude.

    Feel free to search for information and any question you might have- just ask. The more specific your questions are the more feedback you might receive.

    Talk to your parents. Ask them how they feel and maybe they too can join us.

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