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  • Good morning! I wanterd to throw a question out. If I should redirect, let me know. I am 8 wks post TP. I have been doing really well other than a cold that started about 4 dys ago. I've been in touch with one of my Nurses as far as care. She said keep an eye on temp (it's between normal and 1 dg high. Looks like it's moved from head to chest. No scratchy throat. Congestion clear and moving out. All of that said, any experience with similar situations much appreciated. This used to be a 'run its course' kind of thing. Not sure with the TP. Thanks!!

    BTW, just joined yesterday. It is fantastic. So much great info! Thanks to everyone!!

     

    • Welcome to this site and congratulations on your recent transplant! I also got a liver among other organs, and my anniversary just happens to occur the day before yours although the first occurred about 14 years ago! As far as the cold goes, I would just be sure to monitor your symptoms, especially the temperature, and keep your transplant team updated especially if it gets worse or does not get better after a while. May I ask if you are getting regular transplant labs? If there is a problem, this could show something. I have gotten mine monthly for a long time. I hope this cold will soon depart and you will feel much better. I wish you the best in your post transplant journey!

      Warm regards,
      Bobbiejo

      • Good afternoon Bobbiejo,

        I was reading some of the stories and I saw where you had the same organs transplanted as myself.

        I was wondering what kind of  immunosuppression  medications you are taking? I am taking Cellcept, Cyclosporine & prednisone and I have had a problem with skin cancer, the dermatologist told me that it was caused by the meds I'm taking. Have you had any problems with this?

        I hope you are doing well & I look forward to hearing from you.

        Thanks 

        Janet

        • Dear Janet,

          I am currently only taking Prograf for my immunosuppressant, 2mg twice a day. I once also took Medrol, but that was only for about the first two years after my transplant. I am sorry that you have been experiencing trouble with skin cancer. I have not had this problem before. This may also be due to the fact that I do not tend to get out in the sun a whole lot as with my fair skin, I can burn easily. I hope that otherwise you have been doing well.  

          Warm regards,

          Bobbiejo

  • Good Afternoon! Just saw this forum today, and promptly joined. Looking forward to hearing other's experiences! I had my transplant 10/07/2019, about 8 wks ago, at UAB. (Birmingham, AL) All has been great so far. Nursing an aggravating cold the last couple days, but have already seen good advice here! Glad to be here! Many Thanks to everyone!

  • 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,
      Bobbiejo 

      • 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,
      Bobbiejo 

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