Connect
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?
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You're the best Rosemary - thank you so much for taking the time to do this. Thank you for your validation; however, you are the one who has done the legwork. You deserve a medal at the very least.
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3 Reactions@banzai Get on the phone and call whatever doctor is caring for your liver problems. It sounds as if you have extreme ascites. I did not have that until the last month prior to when I finally got my transplant but at that point, I gained 35 pounds from retaining fluid. I know some people have a procedure where the fluid is removed. I never had that.
Please take care.
JK
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1 ReactionSue, I have located a discussion in the autoimmune group.
Autoimmune Diseases > Psoriatic Arthritis
https://connect.mayoclinic.org/discussion/psoriatic-arthritis-257d5c/
Your friend can read thru the posts. I encourage him to join Connect as a member, because then he can actively participate by asking questions that relate to his concerns. He is also welcome to the Transplant group where some members have experienced other autoimmune related conditions that developd into organ failure. .
Regardless of the source/cause for liver failure, we all share similar fears, and symptoms. He is welcome to join us anytime. He does not need to be alone. And, Sue, you are also welcome. I admire your dedication to helping your friend.
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1 Reaction@banzai,
Jim, Have you called your doctor?
When my belly got swollen and hurt, it was time for a paracenthesis which is a procedure to drain the excess fluids off your abdomen. I had many of the other symptoms that you have alrady described.
Get it checked. Make the call to your doctor.
Hugs to you. I know what you are feeling. Keep me updated.
Belly swollen. Hurt to tears. What to do
Thank you so much for your research and support @rosemarya. I very much appreciate this info. Turns out I had the term wrong since when I was encouraging and reiterating your message about joining the Connect group, I was informed that the condition was Psoriatic Arthritis, and it turns out that this is also affecting his liver. I guess by the time I got home, I was thinking cirrhosis due to the impact on the liver. Would I possibly find info about the Psoriatic Arthritis under Auto Immune Diseases? I am encouraging him to joint this group.
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1 Reaction@banzai When I had cirrhosis, prior to my transplant, I too was cold and tired all of the time. I would wear flannel pajamas to bed with a fleece jacket on. Those are both symptoms of cirrhosis. Also, diabetes is pretty common with cirrhosis. I was diagnosed with diabetes long before I was diagnosed with cirrhosis. When I was finally was diagnosed with cirrhosis I was told by a hepatologist that I probably had it for about 10 years, it takes a while to announce itself. If you are not seeing a hepatologist you should try to.
Lactulose always upset my stomach too. Diluting it with some flavored soda water helped it to go down easier. I was on just xifaxan for a while and that had no bad effects for me. As my cirrhosis progressed I had to resume taking lactulose along with xifaxan. It's a necessary evil and the diarrhea is actually an intended effect to get the toxins out of your system to prevent hepatic encephalopathy episodes (HE). It is one of the very few drugs that the patient has to titrate themselves to achieve 3 - 4 soft bowel movements a day. If you are having more diarrhea than that ask your doctor -- he or she will probably tell you to decrease the amount you are taking.
JK
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1 ReactionI try doze but with lactulose n rixfamin n side effects n stomach I can’t rest. Trying alt Meds but docs use meds n side effects r diarrhea n eat n but all matter is trying get transplant. I was Military aircre b combat vet n learned fly after n dive etc. also writer n photography but now too I’ll n tired. If I do one thing day that’s it. I went from 205-135 in year. So I’m cold all time. I gotta get comforter n electric blanket. Thanks for caring. I’m n Facebook but opinionated ha.
@suecreader @rosemarya I googled "Psoriatic Cirrhosis" (slightly different spelling) and did see a number of things that might be applicable. Sue, you could try that if you have not already. I found it interesting that psoriasis can be related to many other things, I never knew that. What I did know from having cirrhosis that our livers have an influence on so much within our bodies - it's amazing.
JK
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1 Reaction@banzai Jim. I am so sorry to hear about your situation. Medicine is so individualized, and everybody reacts to it differently. The unfortunate part, as you are experiencing is that medical science has not yet reached the point of satisfaction and healing.
Sleeping can be a difficulty with liver disease. I am guessing that you doze a lot during the day. What do you do to pass the time?
How can I support you during this difficult time?
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