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  • Hello

    its my first time on this site Tx 8/24/19 all went well until about day 60 starting to get joint pain numbness and tingling feeling in legs and arms ,Tylenol doesn't do much anymore,Have asked Med to reduce som of my meds.

    Seems like I'm not the only one having this issue,lots of info on this site glad I found it.   Rudi 

    • Dear Rudi,

      Welcome to the site and congratulations on your recent transplant! I also received a liver among some other organs, and I experienced some numbness and burning in my feet, especially early in my recovery from the surgery. I was put on gabapentin to help with what was called peripheral neuropathy. I still sometimes feel a little bit of numbness and tingling in my feet and sometimes my hands, such as when I take a shower, but it has gotten to the point where it is tolerable for me, and I am no longer on the gabapentin. I hope that with time it will get better for you as well. I wish you well. 

      Warm regards,

      • Hi Bobbiejo

        Thanks for the boost I needed it.

        Best wishes for U      Rudy 


  • This is my first time posting. I had my liver transplant 01/24/2019 and finally left hospital on 7/04/2019. Many complications including an Illius , leaking bile duct that was repaired multiple times , left hepatic artery thrombosis leading to death of left lobe , the arter also bleed and nearly killed me before they could repair it. Luckily I was in hospital at time. Have stent in main portal vein, when they put in stent they caused my spleen to rupture. That was close to death as I've ever been. Was in a drug induced coma for about a week then when I awoke had fluid on my lungs could barely breathe wasn't supposed to make it . I was delusional and hallucinating constantly for a month while having parracentesis and thoracentesis. Now that I'm home I have.been back in hospital about once a month usually for 4 to 5 days. Have tremendous pain in liver area. Doctors say it's the right lobe growing to replace dead left side. Still need parracentesis occasionally. Taking ya to and cellcept as well as lamivudine because liver came with hep B and C. C is currently undetectable thanks to mavyret. Other than constant pain, fevers weakness and fatigue I manage to keep trucking along. Doctors tell me my complications put mme in a survival group where only 3% survive. I wish I had a nice ten day stay and only the occasional adjustment to meds due to diarrhea or headache. Lol. But I'm gonna get through this and me and the wife are going to RV around this beautiful country of ours   
    would love to hear stories from others who had tough experience. Thanks for letting me ramble and forgive punctuation and spelling errors. I'm writing on my phone and have poor vision. 

    • You have definitely been through a great deal, and I hope that you and your doctors can help to you to work through all these issues so that you can more fully recover and feel better. I hope you have a lot of good support from the people around you because I know how important that was to me in my long recovery from my transplant surgery. I was at first doing very well right after my surgery which involved receiving a multivisceral transplant of a new liver, spleen, pancreas, stomach, small and large intestine, but then all of a sudden one of my lungs collapsed, and the doctors had to take me back in to surgery. The doctors were not sure if I would make it at that time. I ended up being on a ventilator in the ICU for almost four months struggling with infections, delusions, hallucinations, and frustration at a lack of progress. I was in the hospital for about six months trying to recover.  However, since then, I have been doing rather well in regards to the transplant in that I have not had any major episodes of rejection since then, and that was about 14 years ago. I truly hope that once you make it through this rough time, everything will become much easier for you. I know for me, the first year was definitely the hardest. Keep up that fighting spirit, and know that you have people here who will be wishing you the best and cheering you on.

      Warm regards,

  • Hello everyone. I'm 9 months into my liver transplant. No rejection. However, since June I've had high enzymes numbers & I had a stent put in the Common Bile Duct because it was narrowed & they found debris in it.  After 3 months they took it out but I still have the problem.

    Last Friday I had another ERCP done, they put in another stent but the problem is that the debris is way up in the donor's liver radical ducts (the tiny ones). Dr. increased Actigall (dissovles stone) & hopes this will help.

    They say what's going on with me is rare. Anyone else here have had this problem???

  • Hello Friends

    I am 45years now i had my liver transplant in 09/29/2017 at Max hospital New Delhi, India. I was initially on Prograf but later develop complications associated with persistent Diarrhea, Vomiting and lack of appetite. I lost my weight drastically. I was down for more than a year. Around November last year, I had undergone a pertial splenic embolization procedure and my prograf was changed to Neoral that's cyclosporine  i became stable after 3 months. I have gone back to my normal activities. I thank Almighty God for His miracles and give kudos to Prof. Subhash Gupta and his entire surgical team. I will never forget them. I also thank my dear son Mubarak for making sacrifice willingly to donate his liver. May the blessings of Allah continue to be with him throughout his life.Ameen

    I wish all my friends speedy recovery

    • Wonderful news, Kubura! May you enjoy many, many years in good health.

  • Hello all.  

    Its been awhile since I have logged on or even visited the site. My liver transplant was in August of 2015.  Ive been doing well except for some occasional elevated enzymes.   We did a biopsy about 6 weeks ago that showed rejection.   I was glad initially that it was not the PSC returning.   We have increased my tac to 3.5 twice a day and now started zortress and that is up to 3.5 twice a day and 35 mg of prednisone.  Enzymes are coming down.  Slowly. I guess why I am here is to ask about your experiences with rejection and taking zotress.  I am experiencing numbness and tingling mostly on my right side.   Face.  Back.  Fingers toes.  Really weird.  I told my doc.  They don’t seem to be too concerned.  If anyone can share their experiences I sure would appreciate it.   Thanks!!  

    • I know the feeling of telling your care team of strange symptoms and not getting the concern from them you expect. One your 6 months out they don't seem to care nearly as much. I can't even get my transplant coordinator to return my call about a hospital follow up appointment to schedule a echocardiogram because fluid in abdomen may be from heart. 

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