Share Your Thoughts

You need to be a member of TransplantFriends.com to add comments!

Join TransplantFriends.com

Comments

  • Hi folks,. Just joined this site, I had a liver transplant in June 2013, I also blog on the British Liver trust site. I have had a few ups and downs but in general I'm doing ok. My only concern was whilst the surgeon was putting my new liver in he branded his initials on it, but that's in the past now. If you want to know more about me or my transplant just ask.

    • Listen Gordon. After a liver transplant, 2 neck surgeries, a lower back surgery and knee work I have Body By UCSF tatted on my bum 

  • am now 9 months post liver tx.have had my mmf replaced by azathioprine. have been taking the med for about 6 weeks.the side effects are terrible..my skin feels like its been scalded.it really burns.also it seems to have caused chronic constipation.i mean chronic.even lactulose doesnt seem to help much at all.am wondering if anybody has experianced bade side effects on azathioprine.would really value anybodys experiance of this med.thanks

  • Hey. I'm new to the group. I had a liver transplant two years ago. I am well and back to work. (We would like to share experiences as we do not know people who had any organ transplant).  

  • Hey there. I'm new to the group. I'm currently on the transplant waiting list for both liver and kidney. Wanted to join to share thoughts, fears and learn from others that are going through or have gone through this process.
    • Hi, I'm new to the group as well and 2 weeks post transplant. It was not for me but for my 7 months old baby boy and the experience was and still Is terrifying. We didn't have to wait long, he unexpectedly received a liver while his father was almost finishing his compatibility tests and was about to take sick leave and donate his left lobe to our child. All of a sudden the liver came up and everything Just rolled out with high speed.<br/>
      <br/>
      As lesson learned I'd say the overused "don't lose hope", also I'd advice you to receive all the help offered even of it's just a home cooked meal, everything comforting and familiar helps.
      Don't freak Out if things do not go smoothly post transplant. According to our surgeon they almost never do, we're at our third surgery already(the transplant and 2 bleeding complications ones) and it doesn't mean that things went bad (according to the doctors, the family feels something else obviously)<br/>
      Also prepare for an emotions rollercoaster and last but not the least don't worry, we're all much stronger than we think, we just need the support of our loved ones!!
    • Hi, we will not be able to share experiences about "waiting list" as things happened so quickly with my husband. He become sick, and the doctors at first could not establish what was wrong. Then they told us that it was Willie's liver and "they are going to try to help him". Our knowledge about transplants was zero. When they said Willie will need a liver transplant, but because we are not European's, they do not think that he would even get on the list. I had to google over night and tried to make sense out of what was happening. I was so caught up in the events that happened rapidly, that I even missed the fact that Willie signed papers  just before he become disorientated. And then he was in a coma and I had to make decisions, which I had no clue about. I just went with the flow. We learned a lot in the past two years and we would gladly share our experiences.

      • How did you deal with your husband in a coma and you not being able to understand his needs?<br/>
        I'm a bit in the same situation with my small baby boy that doesn't yet speak, he's still intubated and highly sedated and sometimes very agitated. It just drives me crazy not to be able to know what he needs and see him struggling there, tied up in the bed(since he's too young and he might rip out his tubes from the throat)
        • Dear Laura, I spoke to Willie even though the doctors said that he did not hear me. There was a time after he come out of the coma that they tied his hands to the bed also to prevent him ripping out the tube from his nose. He begged me to untie him and I could not. That was hard. He asked me to take of the gloves and mask, and I could not. It was for his good, but how does one explain that to someone who was then mentally disturbed (and in your case to small to understand)? I did the only thing I could do, I prayed. In ICU they do not have space for chairs, they allowed me to stay with him, but I stood next to him bed and prayed. I sang to him. I took the Bible and read the Psalms and sometimes sang the Psalms over him. This I did for hours. How did I cope, I can not tell, all I know, I took moment by moment and God kept my. I was grateful for every second he was still with me. And I lived for the moment. As we have no family in Germany, I did not have someone who could take over, therefore when I went home to rest a couple of hours, I intrusted him into the Hands of God. I do not know if anything I said now, helped you, but this I know, Willie and me will pray for you and your precious little boy. Trust in God, there is nothing else to trust in.

          • Laura, on Transplant Friends' Face Book you will find Natalie Gerstmar, she was 21 months old when she received her liver. Now 28 years later, she said on fb that people can contact her for questions. 

This reply was deleted.

This group is for our friends interested in sharing information regarding all aspects of liver transplantation. We are here for support.  

To create a new group discussion, choose the discussion then click on the plus sign top right of page.

339 Members
Join Us!