Liver transplant - Let's support each other

Thank you Rosemary for sharing those links to PSC discussions. Mayo does an outstanding job of keeping us educated and up-to-date. They provide wonderful tools that have been extremely beneficial in our navigation of PSC & transplant. That's interesting, my son does not have IBS either. His doctor didn't really say if there was any significance in his not having it other than it's one less thing to worry about. Also interesting you mention a history of autoimmune conditions in your family. Many years ago I was diagnosed with Epstein-Barr virus. It was assumed I had mono that was left untreated. I don't fully understand it but I believe there are studies to show a correlation between EBV & autoimmune diseases. Just makes me wonder if there is something I passed on to my son genetically. There is so much research yet to be done! My son is receiving treatment at the University of Utah's Liver Clinic & Transplant Center. There is a team of doctors that consult on his condition. One of his doctors told us about the Mayo Rochester Transplant Center and what an excellent facility it is (and you are living proof!). That's what led me to the Mayo website.

@gaylea1 That was one long HE episode. The most mine lasted were the ones that put me in the hospital and that was generally for two or three days, but it sure seemed longer.
After my transplant, when I was feeling some pain, my husband would say "no more lactulose" to make me feel better. It really is miserable stuff. My daughter would make me laugh by pronouncing it in a very odd manner. You have to do whatever you can to find something to laugh about.
You were fortunate that the medications prevented you from having any more episodes. What was your MELD at transplant? It sounds as if you are doing very well, that's wonderful. I did very well too. It really does seem like a miracle.
JK

@stella25 Your son has not had any HE episodes, correct? I would think they may not put him on anything unless he does experience them. I sincerely hope that your son, like many people who have cirrhosis, never have to go through that. As I said before, if someone is a victim of HE episodes the caregiver has to try to be understanding as difficult as it may be. My first HE episode lasted for a relatively short amount of time but since it was so odd my husband brought me to the ER and then afterward I had to see my PCP. She called me on the phone after I had an appointment with her and told me she thought I had Alzheimer's! Two other doctors, one a neurologist, were stunned that she would do that. A lot more has to be done before Alzheimer's is diagnosed. After that I did some research to find a new doctor.
JK

Oh my, I'm so sorry you had to go through those episodes. How scary for you & your loved ones. There was another medication my son's hepatologist considered but I don't remember what is was. Could be the xifaxan you were taking. It was during that office visit they discovered he had a blockage in the bile ducts and was admitted to the hospital for an emergency ERCP. They decided to hold off on the HE meds for now. He will have a follow-up ERCP in two weeks and we will readdress it at that time.

How are you doing after just a month? I wish you a speedy & successful recovery!

@stella25 I was diagnosed with cirrhosis while in a life threatening HE episode. Took 3 weeks to come out of it and i still never regained full cognizance. I was on lactuose for 2 years and rifaximin as well. I didn't have any HE episodes there after. I just had my transplant 1 month ago and am so happy no lactuose anymore.

@stella25 After a few HE episodes, two which landed me in the local hospital, the neurologist (my PCP thought I had a neurological problem) suggested that he thought the problem might be my liver so they tested for ammonia, which was high so they put me on lactulose. I then had a CT scan which confirmed the cirrhosis diagnosis. I was on lactulose for a couple of months until I was able to get in to see a hepatologist at MGH (Mass General Hospital). The hepatologist prescribed xifaxan, and I was able to discontinue lactulose.

Lactulose did not entirely control the HE episodes but it was better than nothing. I would have to look back on the dates but I think it did keep me out of the hospital for a while. After getting on xifaxan I had no HE episodes for almost a year, then I had another one. We thought it was because of "the perfect storm" as my son dubbed it because a number of things had happened that can lend themselves to increasing the odds of an HE episode -- a very difficult ablation, followed by norovirus, and probably not holding my medications down due to the norovirus. So at that point, I had to resume taking lactulose along with the xifaxan. I guess the doctor was right, that the HE episode happened due to my cirrhosis progressing, because I then had another in the summer even though I was on both medications. If you have any other questions about it, please just ask. If you would like I will look up exact dates of when the various things took place.

Thank you for your good wishes, I wish you the same. I hope your son is able to get through without the HE episodes. To me, they were the worst thing possible. If he does get them, please remember he is not in his right mind when he has one. Some were not too severe, and I could go to bed (they always made me tired and gave me a stomach ache) and wake up much better, just sort of fuzzy. The more severe ones left me totally irrational and difficult to deal with. Even now I get tears in my eyes just thinking of how I was. The strange thing is that I actually recognized at times that I was irrational but I couldn't help myself! Except for a couple of the severe ones that landed me in the hospital I have a pretty good recall of them, and how irrational I was. One time I even tried to hit my husband which is so unlike me. That was before we knew that I had cirrhosis so we had no idea what was causing this behavior. My daughter happened to be there and for a long time I felt like she was somewhat hostile to me, even after it was discovered that when I had these episodes I was not of my right mind.
JK

Stella, I do not fit the mold! I also do not have the IBS that many patients with PSC have. I do have a history of some autoimmune conditions on my mom's side of the family. For example, I have an autoimmune skin condition (vitiligo) as did my mom and grandpa.
I have located 2 older discussions where members are talking about PSC. They might contain something to let you know that there are others.
In the Digestive Health Group -
https://connect.mayoclinic.org/discussion/primary-schlerosing-cholangitis/
In the Healthy Living Group - PSC of the liver
https://connect.mayoclinic.org/discussion/psc-of-the-liver/
If you haven't already seen in Mayo's Patient Care & Health Information: Diseases & Conditions: Primary sclerosing cholangitis
https://www.mayoclinic.org/diseases-conditions/primary-sclerosing-cholangitis/symptoms-causes/syc-20355797
I was originally treated in Kentucky, but was sent to Mayo Rochester to see one of the doctors who is featured in the PSC Pages. Will your son be treated at on of the Mayos?

JK - Congratulations on your successful transplant! And thank you for your kinds words regarding my son. He has not had HE episodes yet. Hopefully, like Rosemary, he is able to avoid those. Were they able to control your HE episodes with medication or treatment of any kind? My son's hepatologist suggested they may start him on lactulose. I wish you continued good health and much happiness come the New Year!!

Rosemary - So glad I joined this group and happened upon you. You have given me hope & encouragement as we begin our journey to transplant. Rare group indeed. I've yet to tell a friend or family member about my son's PSC who knows what PSC is. I have a couple of close friends who have been doing medical transcription for 20+ years and even they had never heard of it. Even rarer still is your being female and 50 where we have learned PSC predominantly affects 30-40 year old men. I wish we did not have to meet under these circumstances but am extremely grateful you have chosen to use your experience to mentor and guide us.