Liver transplant - Let's support each other
What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?
Interested in more discussions like this? Go to the Transplants Support Group.
@tgshomes I’m sorry your dad is in the hospital again.
I did recognize people I knew, but I didn’t know the year, who was president and a slew of other things. As you may start noticing, HE symptoms tend to run the gamut. I think everyone has confusion but many other symptoms vary. I am a very non-confrontational, non-aggressive person, but I tried to hit my husband during one episode. That was before I had a diagnosis so we didn’t know what was causing my behavior. My daughter (she’s an adult) was present and horrified. I think for a long time after that she was actually upset with me.
@gaylea1 I do have some short-term memory problems but I assumed that was due to getting older. Interesting to think it could be related to past HE or perhaps to medications.
JK
I understand melancholy. I have been pushing hard through the fog to reclaim myself. I worry about kidney health and blood pressure. It seems to me that the stronger I get physically, the more mental strength I gain. Someone suggested that I challenge my self by adding one new activity every day--simple things like sweeping the floor, getting the mail, cooking. Now I can walk 2 miles carrying 5lbs in each hand and not pant going up the hills. It is tedious, rebuilding what you had only weeks or months ago, but for my mental state it is necessary. It is great that you are optimistic, that takes you far. Best wishes.
@tgshomes I'm sorry to hear your Dad is in hospital. I personally never had kidney issues but there are others here who can address this better. Be patient with your Dad even though it is scary for you. Being in his place I remember feeling extremely frustrated not being able to answer the simplest questions correctly. I had nightmares about this. Eventually things will come back to him but maybe not quickly. Just keep giving him the correct answer. Patience is the key right now.
Advancing liver disease can affect the kidneys. Sometimes the liver transplant will bring the kidneys back to health. Sometimes patients require dialysis until liver transplant.
Never give up! My doctors and my family did not give up on me. I had a liver and kidney transplant 10 years ago at age 60.
Sending positive thoughts.
This is helping so much. Did anyone have kidney issues as well? My dad is also battling kidney failure and was just hospitalized again this afternoon. He doesn’t know the year, the president, only who my mom and I are. Which I am thankful for. This is so incredible hard for our family and we are not giving up.
@mostlybill I was taken off prednisone and cellcept months after transplant . I had very bad tremors and shaking and once off those meds i was fine.
@mostlybill I am definitely not the same person post transplant. As you mentioned a myriad of small things add up to different obstacles in every day life. I also seem to be living in a "drugged" state. My tastes for certain foods has changed dramatically. I live day to day not thinking much about tomorrow. I am not depressed but seem to be melancholy. I cant think that my experience is due to medication as I only take 1mg tacrolimus every 12 hours. I am optimistic though that as time goes on I will begin to bounce back. Right now I'm just grateful that I'm healthy and still here to enjoy life with my family.
@tgshomes
As a Newcomer to the world of transplantation, I want you to know that no two transplant patients are alike - before, during, after - transplant. With that in mind, I want to share the link to the Transplant Pages on Mayo Connect. Unlike the discussion groups, the Pages are written by Mayo Staff, and like Discussion Groups, we have the opportunity to join in the discussions there, too! I believe it is a win win situation. I would like to suggest to you that you begin with -
Top Takeaways from "Transplant 101: Preparing for Your Journey" by Mayo Clinic Transplant Staff
https://connect.mayoclinic.org/page/transplant/newsfeed-post/icymi-key-takeaways-from-transplant-101-preparing-for-your-journey/
Here is the link to the Entire Transplant Pages. You can scroll thru the Newsfeed and find articles that are meaningful for you. You might even recognize some faces! https://connect.mayoclinic.org/page/transplant/tab/newsfeed/
Your dad is in good hands at Mayo. I look forward to hearing from you.
Thanks for your thoughts. I think the tough part is that we need to come to terms with side effects, they will never go away. As I grow stronger I will be adding yoga to my weekly activities. This was a great help to me with relaxation pre-transplant. Daily walks help as well. I am also eager to resume social activities. See more of friends, grandchildren, and my wife and fewer doctors!
@tgshomes it's me once again lol. The loss of appetite and tiredness are unfortunately a couple of the symptoms caused by liver disease. I drank Ensure or Boost most of the time. Occassionally I could stomach some scrambled or soft boiled eggs. I tried to eat fresh fruit as often as possible. I also remember drinking lots of water. As for being tired I still am battling fatigue but I know that exercising will help me beat that. My appetite is still poor but I had post transplant problems that held off my appetite for another 7 months. The lactulose and rifaxamin definitely curbed my HE episodes but I was in a constant fog. Conversation was difficult and it was taxing. I preferred to have silence with just my family around me. I didnt participate but liked to listen. Hopefully your Dad will eventually become clearer once the meds start to do their work.