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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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  • I'm Monique, nice to meet you Meagan! I see it's been awhile since you posted, but if you need to chat I'm here! I was transplanted 7/5/17, 9 months post transplant now, doing great, just needing to tweak some of my meds. I waited on the list for 3 years. What is your meld score, and what area of the country are you in? I am in Western MA, and was meld 28 when I was transplanted. Hope your condition is stable and the waiting time is short!

  • You are correct, "they couldn't possibility understand what I am going threw".  Only you know.  I have had 2 transplants and it does not get any easier the second time around.  I found it made me stronger.  It is a tough thing that has occured to you.  It is a wonderful thing that you where fortunate enough to have happened to you.  And yes, it can be hard as well as easy going at the same time.  I came to the realisation that people in general are not that aware of organ transplantation and the affects on us.  Heck they are scared thinking about themselves going through it.  So I took the position to help answer any questions others may have and help clarify things, any thing.  This helped me understand me better.  I think each of us have a different reactions mentally and physically, plus how we feel or deal with it.  But we seems to go through like things and end up experiencing similar things and come to similar conclusions.  Feelings are not easy to understand at times, some are easy to deal with like feeling happy, and others can be difficult to deal with like feeling sad.  Sometimes I felt like I was so detached from things going on around me that I felt alone.  Then other times I felt very involved with everything around me and in the center.  You can compare it to someone else who experienced a life changing healthcare event, like having cancer and then cured and wonder how they deal with it.  We are feeling the same thing they feel.  Talk to others that are in a similar situations when you feel like you are bouncing off the wall with so many feeling taking place at the same time or close together.  There are support groups out there that are great to get involved in.  Your Transplant Center, UNOS, your OPO, the national, state and local groups that are there to help you and your condition like the American Liver Services, ALS.  It is all normal and you will get through it.  Remember don't beat yourself up for how confusing it gets at times.  Learn to relax, there are many techniques like YOGA, physicl work outs, reading, talking about it, a hobby.

  • Just follow what your Dr. Says, but rember to lead a normal life.

    You will be sore for awhile, but walk and move around as much as you can tolerate

    I had my liver transplant 32 years ago and am still doing fine.

    Just rember to lead a normal life"

    • Patricia, this is wonderful advice for all of us. I'm nearly 7 mos post op for liver transplant and wondering if we ever can "let up" on the food restrictions ... like not enjoying ice in a restaurant, eating sushi, eating certain cheeses (like my faves blue cheese and gorgonzola), eating from buffets ... have you a strong sense of that?

    • Patricia, this is wonderful advice for all of us. I'm nearly 7 mos post op for liver transplant and wondering if we ever can "let up" on the food restrictions ... like not enjoying ice in a restaurant, eating sushi, eating certain cheeses (like my faves blue cheese and gorgonzola), eating from buffets ... have you a strong sense of that?

  • Megan

    All your hard work is over.

    Stay healthy from here on out and make the right choice on your offers....

    Rely on your Transplant team and Family and you will do FANTASTIC !!!!

    As far as your dealing with the thoughts, Remember your donor lives on in you and you will cope well with the idea.

    Best wishes to you and your Family

     

  • Megan

  • hi Meagan, I had a liver transplant 13 yrs. ago and I am doing great!  I also was worried about all kinds of things.. If I had to go back at that time and talk to myself I would say don't worry!  There is so much more knowledge now of transplants!  I am sure you will do well, like I am doing.. It sure saved my life . I had liver cancer!  I am so grateful and happy I went for the transplant.. In 13 yrs. I have got to see my grand-kids grow up and go to college. I have had 13 yrs. of birthdays, mothers days, Easter, valentines day, thanksgiving, christmas, anniversaries!  you get the picture. I wish all of that to you.. prayers to you . no stress!

     

  • Awesome.  Just think - no Transplant List = no help.

    We are so fortunate that medicine has evolved to this point.  Now we can hope more people donate organs.  I am/was eternal optimist and a competitive person so I felt like it was my duty to push forward as best I can.  I know I posted a lot today about this but start getting ready now.  Rejoice in pre surgery milestones if possible.  When those blood tests come fast, furious and often pay attention to them.  Hey doc what can I do to assist with these results?  

    Minfulness and Well Being can be poweful tools.  Start now.  Your mind will thank you and your emotions will be swayed.  It so happens I was alone much of the time as I was so sick so I did rely on some self motivation.  Strong will can serve you well during recovery as well.  Some of this may depend on how you feel now physically - not sure where you are at there (sorry if i missed) but know that the pain, side effects, etc. post transplant are just steps to moving forward to where you will soon feel better than pre transplant.

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