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  • Hi everyone my name is James, I had a liver transplant and open heart bypass at the same time 7 months ago. I feel better than I was before the transplant but still have some pains. 2 weeks after my operation they had to open me up again, my bile duct that they had connected from the doners liver to my bile duct was narrow, so they operated again to fix it. They connected my bile duct to my intestine. I was in hospital for just over 4 weeks. Now I have this tight pain there when I walk, move or exercise. Also while I was sick before the operation I created type 2 diabetes that was caused by my cirrhotic liver.
    I'm currently experiencing nerve pains on my toes and feet (since 2months post-op). It feels like coldness/numbness/tingling and lots of pain, especially at night time. I'm not sure if it's the diabetes causing this, the medication I'm taking (anti-rejection, Prograf) or something else? Is anybody experiencing something like this?
    Thanks, James.
    • Hi James,

      I'm 8 months post transplant and had a stent put in my bile duct and I am experiencing the same symptoms as yourself. Just like you my feet are cold and numb yet hot in bed at night, I am not sure if i am diabetic i will have to find out. I have extreme itching all over my body that causes much discomfort.  I am hoping these are side effects of tacrolimus and azathioprine.

      Best of luck to you,

      Bill

    • Hi James,

      The numbness/tingling sensation you described may be Diabetic Neuropathy, exasperated by the Prograf, which causes about 20% of users to become Type II diabetic.  Lucky me, I became type II from it post Tx (though there was a paternal family history of it, so Prograf may have just hastened a reality.)   I am now insulin dependent.  In a few weeks, your dose of it may begin to lessen and controlling blood sugars will become easier.

       There are many treatments for Neuropathy, with varying success reported.   I have tried many "cures," including Lyrica (pregabapentlin) which works great, but I found too addictive.  Sounds odd, but a major study at UCSF produced good results with a 5% Capsaicin (hot pepper) creme that is now on the market. I wish you great success with your Tx and hope you enjoy many, many years in good health.

  • Has anyone had transplant at Medical University of Charleston? If so, what was your experiences there?

  • 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.
    • Hi Jacque my name is Rick I had pretty much the same experience i was in the hospital and was a day away from the end (I didn't know how bad I was) got a call from my doctor at 11:30pm they had a liver. I had the surgery went well went home healed up and went back to work. BIG MiSTAKE Iinstall elevators in high rise buildings in NYC I ended up with lung infections blood cots went into coma with a ventilator I ended up in the hospital for 100days than rehab where they screwed up rejection Meds back to Mount Sinia for another 45 days then home but on dialysis finally after 10 treatments and 60lbs of water out I went home 2 months of physical therapy I was able to start walking I ow am living and feel great. When you get your transplant Do What the doctors say. I almost died because of being stubborn all will work out its hard to keep the spirits up it will work out Rick talk any time you need to
    • Hi Jacque ,
      Your story sounds so much like my experience. I was sick for 1 1/2 years with all of the symptoms you have. I had only a liter of fluid and after my surgery 5 months ago I had to drink 4 times that amount. It was a struggle because I felt guilty because I had been deprived so long. During my sickness I just was miserable and watched TV all day and most of the night. Since I've had my surgery I feel quite good but, cannot seem to get back my many interests. I hope you get a new liver soon and fell free to talk anytime. Connie
  • 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?
    • Hi Jeri,

      I am 109 days post transplant, just had my transition visit yesterday. I get night sweats, sometimes pretty bad, only at night never during the day. I was told it is a combination of the TAC and type 2 diabetes. I currently just deal with it and have told my team about it, they do not seem to concerned. I get the feeling as long as the blood work is good, they are not concerned. I am noticing some more aches and pains as my body is adjusting. Hang in there, it is an experience, all the best.

    • 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.
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