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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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  • Best of Success to you! Relax and allow your transplant team to take the best care of you.  

  • I do hope you receive your gift soon. My only advice is to start placing yourself as #1 on your priority list. You are about to face a fight for your life and all else will be a distraction. Good Luck! 

  • Meagan, welcome to our incredible group of knowledgeable people (mostly from trial and error- which is actually the best) as we may have most of your answers after transplant. This team has guided me well. First of all, you will find a NEW normal. Post tx, don’t hunt your old normal or your frustration will drive you crazy. Find your new normal as the months past by as it will get better and better. There is no time limits to this. If more problems after transplant, expect to allow more time for a new normal. They say a year...ummmm, many times, not so much. I laugh at what some transplant teams tell patients not to eat or drink because they only agree on about three things. With that said, still follow their instructions. With every problem, you and they will find a solution. It may not be the one you want but it will be the best you may have. Be flexible. Hair may or may not grow back, rejections happen, grapefruit will only be held and smelled, never eaten plus much more but you will live your new life with all its challenges and rise to the occasion. PS: Do your own research. I learned after two years (dagnamit) that tac (a highly used anti-rejection drug), leaches our all your magnesium in the first year, causing osteoporosis. The amount my doctor prescribed couldn’t touch what I was loosing. Now I decide on my Vit and Minerals, then check with my doc here and then my team. Yep, it seems like the long way but it works. I was depressed for over a year and remembered a good chiro saying he put his patients who were on low D3, on 10000 IU a day for month or so before cutting it in half so I tried it and “wala”, no depression in 24 hours. It also raises your platelet count. Mind you and everyone, I am not saying, “take my path”, I am saying, “find yours” and these amazing people will guide you, though they will not agree on everything. I like that. Congrats. I got my liver in 3 months so be ready sweetie and God bless you.

  • I had my kidney/pancreas transplant 9 years ago. I was on dialysis for almost a year before I didnt have to anymaore because they found a match for me. I was sick almost everyday. Also I could breath real good and weak also. Plus I had Type 1 Diabetes at the same time. I felt so bad. Nobody new how I felt. I was frustrated but I made it through.  Prayer got me through. Now I am well and have thanks everyday for making it through, 

  • 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

     

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