Liver transplant - Let's support each other

@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.

@jodeej
Hello Jodee and Tim
The blessing is mine , I meet you on connect. I followed your lead on Tims issues. Though our problems were different but the same. You allowed me access to y’all journey. I learned from y’all on what to expect and I could prepare myself. With the help of Lisa and Dwight who was also ahead of me on there journey. Meeting you and Tim was awesome. I was so pumped up when I meet y’all and saw how Tim was doing. Y’all gave me a huge lift. The continuous conversation are valuable to me. So thank you. You continue to help others. True Blessing.
Love and prayers
God Bless
Jerry Drennan

mnemeth318, I am happy to hear that you are recovering well. It if fun, isn't it, to count the days past transplant surgery instead of days waiting? Like counting blessings and more blessings!
I like your 90% - 10% analogy 🙂 It is easy to be too eager as we wait for the body to play catch-up with the new energy and strength that come with a healthy organ. I still have a tendency to overdo and then I need to step back for a slowdown period. My husband is very watchful and he will remind me to 'take it easy' at times.

I want to share with you something that I like to share with new recipients. I guess you already know many of the tips, and might even be able to add a few (Consider this an invite to do so.)
Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/

Did you experience any difference with the 2nd surgery procedure vs the first surgery procedure and recovery? Was it an easier process or more difficult process for you?

Jerry, Now that you have received your transplant, I want to share this with you.
Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/

Stella, It also took between 1 - 2 years for me to have a PSC diagnosis. I was just over 50 then.
I was 60 when I received my transplant from an anonymous deceased donor. And the time in between was a mix of ups and downs. I was also told by my GI when it was time to go to the liver transplant team for evaluation, and I was both comforted and frightened by that.
I know that we are a rare group, and that is how I found Mayo Connect. I wanted to meet someone else who had a transplant due to PSC.

@jerrydrennan your faith and attitude are an inspiration to me. I'm so glad we met!
Blessings,
JoDee