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NASH and cirrhosis of the liver.
Digestive Health | Last Active: Oct 28, 2023 | Replies (94)Comment receiving replies
Greetings,
Just came across this page while searching my symptoms post liver transplant. Here is my past history leading up to problems as of today. I have been experiencing head aches and fatigue for years. In December 2018 I noticed very dark, almost black, stool and started to vomit red blood which turned black. As a result I had 5 separate surgeries for esophageal varices. Finally decided to go to the Mayo Clinic in Phoenix in January 2020 to figure out what was going on. Ended up leaving there with a TIPS after the second attempt. First try the figure they tickled my heart and they had to abort the surgery as my heart went crazy. I was called to get back down there in April 2021 to start the Liver transplant process as I was in End stage liver failure. Got the call at 4:30 am July 23, 2021. Surgery started at 12:30 pm. Had to go back to operating table July 28 for a bile leak. While recovering in the hospital they discovered bladder cancer. Back to surgery on August 20, 2021 to remove the mass. Finally allowed to return home on October 14, 2021.
I seem to not be improving at all. Actually feel worse then pre-transplant. I have had Hepatic Enchephalopathy pre and post surgery. Actually feel this is getting worse along with Massive constant head ache, worse than pre surgery, they are trying to address with Botox treatments. Stomach pains which my local Doctor feels is from scar tissue as a result of the 2 surgeries with the transplant. my list of post surgery problems are: Hepatic Enchephalopathy ( Memory loss, Brain fog), Tremors, Fatigue, Dizziness, Head aches, Stomach pains lower abdomen, Terrible sleep pattern, Itchiness, Hair loss, Vision changes, Just overall feeling terrible. Currently taking Fluconazole 200mg am. Aspirin 81mg am. Mycophenolate 500mg am, 500mg pm. Cylosporine 125mg am, 100mg pm. Lisinopril 5mg pm. Gabapentin 1200mg pm for head ache and sleep. Biotin 5000mcg to try to stop hair loss. Also take 70/30 NovoLOG for diabetes 18 units am, 8 units pm. Hoping this isn't the new normal as I have zero energy. Anybody else experience anything similar to this? Sorry for the long post. I had alot of info to try to get in and could have gone into deeper detail but this pretty much sums it up.
Thanks for any input.
Replies to "Greetings, Just came across this page while searching my symptoms post liver transplant. Here is my..."
when I started taking gabapentin I know it caused me to feel very spaced out and have memory loss within the first couple days I took it. and that was on 200 MG. Just a very late fyi. Hope you're doing well.
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@rstains, Welcome to Mayo Connect. I am a transplant recipient and I also found Mayo Connect a while back (2009) when I was searching for post transplant recipients. I only had one episode of esophageal varices while I was waiting for my transplant at Mayo Rochester and living at the transplant house there. I was lucky that my bleeding was a leakage, and was treated with banding. That was more than enough to scare me. I have not experienced all of what you are and have been going thru, but I do understand the awful fear and helplessness of it.
Recently a couple of members have been engaged in conversation about their TIPS procedure and about before/after liver transplant struggles in this discussion: Liver transplant - Let's support each other
https://connect.mayoclinic.org/discussion/liver-support-group/?commentsorder=newest#chv4-comment-stream-header
Here is another discussion that I want to point out to you: Want to connect with other post liver transplant patients
https://connect.mayoclinic.org/discussion/want-to-connect-with-other-post-liver-transplant-patients/
Rstains, It has to feel good to be at home in your own bed, but I sure hope and pray that this is not going to be your new normal. It sounds like you are at a distance from Mayo AZ with local doctors treating you, that is how I do it. Are the local doctors consulting with your Mayo transplant team about the medications and about your current medications? Are you able to communicate to Mayo via the patient app? When is your next scheduled appointment there?