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  • I'm new to this board but not new to being on a waiting for a new liver. It's been over 6 months, 2 years since I was diagnosed with end stage liver disease.
    I've got the call 4 times 3 as a stand by for another primary and once being the primary getting to hour before surgery when the surgeon determined the donor liver was too big. I
    At one time I was hospitalized for a month and a half, I swelled up with water in legs in fet putting on 50 pounds, they kept me in hoping a I'd get a liver but after losing the 50 plus an extra 8 pounds they sent me home,mits better than being in the hospital but I hate how I'm feeling I have no energy, no appetite, I fall alseep all the time, I go days without eating regular food I just get my protein in with shakes, pudding and bars. My fluids are restricted to a liter a day so I'm sucking lollipops all the time to avoid dry mouth. I used to love to garden, do crafts, decorate my home, sew, play the piano now I just sit on my butt watching Tv and playing on my iPod, I don't go out so I'm really lonely and I was hoping to find friends to chat with on this site.
  • I'm 3 months post liver transplant and experiencing hot flashes for the first time. Trying to determine if this is medication related or due to a higher platelet count after New liver. Any ideas?
    • Not sure what meds you are on, but I'm 18 months post Liver Transplant and find that my body Temps are much higher than before. I used to always be freezing cold and now I find times where I'm actually hot! And much more comfortable all the time. It's not really like hot flashes, just an overall temperature adjustment. Not sure if that helps, but I wish you all the best.
  • I had my transplant three years back and I am back to normal. I did my transplant in CMC Vellore, India.
  • Hi ... I had my transplant 11 months ago . Quite an experience.. but doing ok. I was wondering if anyone else has horrible prescription drug coverage? A new insurance compAny and now my mycophenolic acid and tacrolimus are going to cost 900 a month.
  • Anyone from south Mississippi?
  • Hello, i had lt in October 201 for hcv and hcc. Cured hcv this year with new daa treatment. Female, 60 years. Doing well but immunosuppressive therapy is not easy after 3 years. Winter is worst with viral and bacterial infections, coughs and bronchitis that take weeks to go away. But I feel great for the most part. I was athletic before my transplant and I still am during summer, but winter is hard. I find the psychological aspect very difficult. I try not to dwell on thoughts of dying of some complication or side effects of the therapy, Advograf and certican, but I get lonely as friends my age are still working and there's not a lot to do. I'm a teacher and had to stop because I contracted every virus that went through the school. My specialist keeps me on double therapy to avoid hcc recurrence. I too metabolise the meds quickly and take daily: advograf 6 mg, certican 1.5 x 2. I have a 24 year old daughter who almost lives with her boyfriend so I am alone a lot. To be honest, although I've always been full of life, happy and optimistic, I feel depression coming on at the thought of living alone. I suppose as a mum I lived for my daughter, ieven got through the transplant and hcv thanks to my love for her. This is a difficult time trying to see a future for myself. Hope someone reads this.
    • Emily, yes, I read your post! You have been through a difficult journey, but you have survived! It is possible that your meds are causing you some issues, but the winter is an easy time to become depressed, and your daughter growing up and striking out on her own is also a reason to feel sad and alone. Maybe talking to your tx coordinator about helping you find a therapist you can talk with, and maybe even see about some medication for your anxiety and possible Seasonal Affective Disorder (S.A.D.) Yes, it really is a fact! I dealt with it several years ago... never would have labeled myself as depressed, but the lack of daylight and inability to get out as usual had me in a total funk.
      You say you are alone more, with your Daughter's busy life. I'm sure she feels so relieved that you are through the Transplant and (basically) healthy. It's not surprising that she is feeling good about being able to live her life and not feel she has to be your constant nurse. There are so many things you can do to help others lives be as good as yours is. You have a Donor and their family that you owe the honor of that person's gift. You have information you can share with others of what your Transplant journey was like and things you can share that will help them on their journey.
      I am not saying it is easy or that life is all rainbows and Rose's. Life is what you make it, and I hope you will make it as Beautiful as you are!!! It's your second chance... don't waste it!!!
    • Emily, read your post seems we both have the same problems I too am alone and have very little help, kids are to busy, all my friends are long gone I am 70 years old just turned. My health has been excellent for the last four years five mo. Now I am having problems with dizziness and passing out, had several injuries no Dr,s have found out what this is. Do you know of anyone who may have the same problems.God Bless you.

  • Hello Everyone

    I just received my TP this past Wednesday. I checked out of the hospital yesterday. We are staying near the hospital a few days. I have my first check up Monday.
    Wow what a experience it has been. They did tell me that so far my outcome is the best I can hope to have. I will confess I had no real concept of the drugs affecting me so much. Overall I feel good, just so dopey & strange. Sleep is the hardest thing so far to get a handle on. Anyone with thoughts or advice on sleep are more than welcome. Well, I guess that has me for now so I'll close.

    Terry
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