Liver transplant - Let's support each other

@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.

@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

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

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

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.

@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

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.

@stella25 Yes, I was fortunate, and it was the neurologist who first mentioned liver possibly being the cause of the HE episodes. I went to him because it was thought the confusion was from something neurological. From what I know the HE episodes should have been a HUGE red flag, and jaundice should be also.
I never had jaundice which I guess was probably the reason that my liver was not immediately suspected, but not everyone does get jaundice, and sometimes the AST and ALT numbers are not really elevated much.
I am so happy for your son that he was smart, found some answers and persisted in getting a diagnosis.
JK

You were extremely fortunate! Goes to show we do need to be diligent about our health and the care we need. Especially with more complicated scenarios such as yours and my son's. My son suspected his liver by searching the internet. His primary symptoms were jaundice (he was YELLOW) and pruritus. He sought a second opinion from a sports medicine physician that a friend recommended. They did blood work which came back with elevated bili and other LFTs. It was that physician who called the liver clinic and got my son in to see the hepatologist 2 days later (bypassed the typical 3 month wait for an appointment). From there it was MRCP, ultrasound, fibroscan, ERCP, colonoscopy, etc.

@stella25 I guess I didn’t fit the profile either since it was almost a year and a half from my first HE episode to a diagnosis. I had other red flags too, declining platelet count, shaky hands, recently diagnosed diabetes, edema (fluid retention in my feet and ankles), plus additional vague symptoms. My doctor told me he was relying on previously made diagnoses, like essential tremor for the shaky hands, and Idiopathic thrombocytopenic purpura (ITP) for the low platelets. When a diagnosis was evasive I think he should have started from scratch.
Your son was smart to go elsewhere. What clued him in that it could be his liver? I was fortunate that I was diagnosed when I was because I had malignant lesions and if there had been more or if they had been just a bit larger I would not have been a transplant candidate.
JK