Liver transplant - Let's support each other

Michael, I want to welcome you to Mayo Connect. I am a transplant recipient, a patient like you. I congratulate you for the past 18 months of new life with your new organ. I don't believe that what you are experiencing is unique to liver transplant patients alone.
Have you discussed this with your medical team because it could be relted to mediciation or an underlying cause. Here is something from the Newsfeed that I want to share with you while we wait for others to drop in with their experiences: NewsfeedPost-Transplant Mental Health & Well-being: Q&A with Shelia Jowsey-Gregoire, M.D.
https://connect.mayoclinic.org/page/transplant/newsfeed/post-transplant-mental-health-well-being-qa-with-shelia-jowsey-gregoire-m-d/

@danab, I know that you are a heart transplant recipient. Have you experienced any similar symptoms with your new transplant?

Hi I am 18 months post liver transplant and struggling to keep it all together. I am physically fine, just emotional, anxiety, and depressed.
no drive left it seems.

michael

@rosemarya
Update on my itchy rash
After consulting my PCP and 2 dermatologists the conclusion is ecxema. It is just starting to phase out and I am hoping it continues that way. I have a collection of medications creams shampoos etc and truly none of them gave me much relief. I also have had asthma flare ups and I understand this goes along with eczema and liver disease. Does anyone have more info on how this all works and if they have any advice.

Also...the State of FL is working very hard with our Congressmen and our new Governor DeSantis to fix the environmental disaster with our waterways and Gulf. The red tide, microcystins and blue green algae have put a major dent in our tourism. We now know for sure that the microcystins are very harmful to the liver and that the airborne particles are far more prevalent than first discovered. We are now paying attention...much too late. The rest of the country is comparing notes with their waterways and hopefully we can all get the information we need to be aware of what is a very serious danger to us all...especially those of us with liver disease.

Hoping all of you had a great Valenine's Day!

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.

@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

Sue, 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.

@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.

@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