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Posts (208)

4 days ago · Liver transplant support group in Transplants

@musicman2019 originally I was on cellcept, tacrolimus (prograf) and prednisone. A few months in they found the cellcept was causing a low white blood cell count and eliminated it and the prednisone. Now I take 1mg of tacrolimus every 12 hours. I have no side effects from it and my liver function is great.

4 days ago · Liver transplant support group in Transplants

@contentandwell the doctors haven't said too much. I experience the ligjt headedness daily. Mainly I get it going up and downstairs. Somtimes if I am carrying things I get dizzy too. I'm thinking more exercise is needed.

5 days ago · Liver transplant support group in Transplants

@jim1208 You are not a faliure! Please try to keep positive. It seems that things are difficult now and they are. I remember feeling low many times but just knowing that there is light at the end of the tunnel really helps. You will get through this. Nap when you feel tired. Bundle up when your cold. Treat yourself well. Keep strong. We are all here to help you through this. The group is always here when you have questions or concerns. We're not doctors but sharing experiences helps so much.

6 days ago · Liver transplant support group in Transplants

@rosemarya yes it has been a long 2 years for me but now I can look back and be thankful, grateful for where I am today. I remember members who told me to hang tight and that my time will come. Now I am advising others that the call will come. I never thought I'd get to this other side. Thank you for your guidance snd unfailing support ❤

Fri, Jul 12 11:14am · Liver transplant support group in Transplants

@kltchrmn my license was suspended Dec 2016 for the same reason. The doctors just signed the forms today to reinstate my license at our ministry of transportation. I lived in a fairly rural area – no buses and taxis were expensive to get into the city. I was literally imprisoned at home all that time. Got pretty lonely stuck in the house day after day, month after month and being ill and waiting for the "call". I can't wait to get my license back!

Thu, Jul 11 8:47pm · Liver transplant support group in Transplants

I went into a hepatic encephlalopathic coma that kept me in hospital for a month. I was in and out of consciousness the whole time. It took 2 months to remeber the day of the week, the date and the month. I forgot my address, phone number and all banking and personal accounts. Luckily i had my children as my Power of Attorneys for property already in place. I still can't recall anything about my stay in the hospital during that time. Apparently my life was on the line touch and go for the first few weeks. My kids were preparing for the worst every day. I have extreme feelings of guilt that they had to go through that. The good news is that I receved my liver November 28 2018. I am so grateful every single day.
Note: Take your lactulose if prescribed to avoid an HE episode!

Thu, Jul 11 12:50pm · Liver transplant support group in Transplants

Yes I can relate. I was light headed and dizzy most of the time but several other symptoms were a lot worse. My MELD was 34 when i was 16 months on wait list. I received my liver 17 months in from being on the wait list. I was very ill the year prior to diagnosis. My transplant was Nov 28 2018. I'm still light headed but thank goodness the worst symptoms are all gone.

Sun, Jun 30 11:47am · Liver transplant support group in Transplants

I also had my worst cramping in my hands. I couldn't hold cutlery or even a pen. It was really debilitating.