Liver transplant - Let's support each other

You have a smart son. Bravo to him for being so aware of his health and for being an advocate for himself. Early on my PCP referred me to GI because he is wise to admit when something needs a specialist's opinion. After reading many other experiences I know how blessed I am to have recieved immediate referral. And then, when it was time for me to go to liver transplant clinic, my GI knew it, amd made referral. Like your son, I didn't have the long wait for appointment, but was seen the following week at the liver clinic at the Univ of Kentucky where I was evaluated for transplant, and listed. I received excellent treatment there. But when the indication of cholangiocarcinoma (and unsuccessful biopsy samples) entered the scene, they knew to refer me to the Mayo Clinic. For me things did get complicated. But by taking one step at a time, and following the direction of my excellent medical providers, I am here and healthy today.
I never experienced any HE episodes, but from the beginning, we were told to be aware of signs. Goes to show how everyone is different!
One of the most comforting things that my GI told me was that PSC patients did well after transplant. And also that by knowing in advance, we had the opportunity to practice healthy lifestyle to be better prepared to carry on.

@rosemarya You really were fortunate to have such a good PCP. I now am very aware that if I, or my husband, ever had anything that was not quickly diagnosed we would self-refer to Mass General. The time I wasted waiting here could have been tragic. Of course with me, the main thing they were trying to figure out was the cause of the episodes of confusion I was having so until the neurologist suggested my liver that was not even being considered.
JK

JK, I cannot even begin to imagine how frightening this had to have been for your family. I never had an HE episode, but we were told to be aware and on the lookout in case something developed between my appointments. I think that it is a good thing that you are telling your experience, because somebody who reads this might 'recognize' themselves and know to seek additional medical opinions.

I am well aware, too, of the pain that my family endured during my own difficult times. I love and appreciate them even more because of it.

Thanks, @rosemarya. My son and daughter of course were not here most of the time so rarely saw an HE episode. My son did come home one time when one put me in the hospital but my worst episodes passed within two or three days so by the time he got here I was on the mend and out of the hospital. My daughter was present for one. My husband put up with the brunt of it and most of the time he was great. The husband in the couple we are closest with was a huge support for my husband. My husband called him two times when I was having an episode and he came over. One time I was almost catatonic and he told my husband he had to get me to the hospital. I was uncooperative so an ambulance was called. We were still at the point that we did not know what was causing these episodes so that made them even more frightening.
Our doctor friend suggested that it might be from one of the medications I was on because there are a number of medications that can cause confusion. Interestingly I was able to discontinue these medications and had no episodes for over three months so we thought that had been it. They then resumed though. I can't help but think that at least one of those medications contributed to causing the episodes but as my cirrhosis progressed they didn't need something else to contribute to them.
JK

Not everyone knows the abbreviations for the conditions, so if you're going to use the abbreviations, put the actual term in quotations. Thanks

@ca426 Sorry, Charlie. HE is hepatic encephalopathy which is somewhat common with liver problems, or at least it is with cirrhosis. It's confusion and irrationality that is caused by the liver not filtering out toxins, specifically ammonia, so it travels to your brain and causes HE. When one of these episodes put me in the hospital the neurologist suggested that my ammonia be tested, and sure enough, it was very high.
Some people with cirrhosis are in a perpetual fog, but my HE episodes were distinct and generally brief. Two to three days is overall brief, they last for weeks or even longer with some people. Most of mine lasted from a few hours to a day and required nothing more than my going to bed to sleep it off. Frankly, I have no idea why that helped, but it did. Perhaps since I was not eating, I was not producing ammonia and it just cleared out of my system.
JK

@rosemarya Happy New Year Rosemary. I know you haven't heard from me in awhile. I have so many new doctors it crazy. Since l last talked to you l had my appendix removed and l was in the hospital twice. I just came out on the 27th. Missed Christmas with the family but l can't complain l still alive. I was on the xifaxan again because Dr Poterucha told me to get back on it. I did and when l called in for a refill l was having symptoms because l was waiting for the refill and the doctor rushed and put me in the psych ward. So now l am back on my medication. I been to a new neurologist and l really don't think he saw anything wrong with me. He never ordered any test and l didn't get a return visit. Then l was sent to the hospital l don't know how many days after it just a blur now. So l have an appointment with the doctor from the psych ward. He a neurologist/ psychiatrist and then my family practitioner, eye doctor and then next month the liver doctor. Which l am so unsettled about seeing him since he told me everything was ok when he had me admitted. He told me my ammonia levels were fine but then later l had my levels checked and it was high. So l am just praying. But now since l am back on my xifaxan and l have gotten off some meds l am fine. I hope you had a wonderful holiday because since l been out the hospital my grandson turned 1. Znd l had Christmas /New Year together. And l had my adopted grandchildren around me this weekend. I just came back from the movies with one of them today. So that's what it's all about spending time with those that love you and you loving them.

Lisa, I am happy that you thought of me! I received a surprise phone call from a girlfriend today, and now I get a message from you. I am ready to do a happy dance.
I am sorry to hear that you have spent so much time in and out of medical/hospital care. Nobody ever promised us a smooth ride, did they? I feel that your doctors are trying to get your system in order, and are referring you to get the necessary treatment to do that. I think that I might have an idea of why the liver doctor wants to see you again, and that is to check the ammonia levels after you have been back on the medicine. There must be some reason that they are going up and down, that is why it is important to take the meds as directed, and to keep the follow-ups.
I know that you enjoyed the time with grandchildren, and they must have been happy that you were back home again. I will be going to grandchild's birthday party tomorrow and I will enjoy watching the kids running about and having real kiddie fun!
I hope your health continues on the mend during 2019.
Are your new doctors nearby? Will you return to Rochester for the liver doctor? Let me know how you are doing.
Hugs.

@techi Lisa, you may want to ask your Liver doctor or hepatoligist (sp?) about adding lactulose to the xifaxin in order to aid the elimination of toxins in your body. This combination worked well for me. I am sorry to hear that you were admitted to the psych ward for this. I alos was jn the hospital over Christmas but in reality it was the safest place for me with the complications I had. Be well.

Hello my name is Jeannie and I have a loved one with cirrhosis hepatic encephalopathy and pancreatitis and is a raging alcoholic I am his gf and caregiver I don’t know how to handle this as it’s getting progressively worse everyday he has fits of rage and gets violent and I need to know how to help him he can’t handle one little speck of stress and he just found out his mom has stage four cancer so he’s a mess . I’m at my wits end and if he doesn’t want to do something he will not do it any suggestions oh and all I have is lacrulose he drinks it when he wants he’s somewhat suicidial and it scares me