Pandora, Dear, you are not alone. A lot is happening to your body and the ammonia does mess your mind all up. I had that problem, too. Start telling yourself you are going to beat PSC and that you are not going to give in to its many symptoms. Your mental health issues are just as important to deal with as the physical.
I considered myself a rock solid guy that enjoyed risk taking activities like flying, motorcycling, sailboat racing. And, when I got sick and the ammonia levels were rising, my memory and judgment got all mixed up. I was a school business manager dealing with millions of dollars every day and I knew the disease was ending my career. I resigned before letting it affect my accuracy and judgment. It was very depressing to me to have to do that.
My spleen was six times larger than normal. I was swelling up with water. My hepatologist had me on 80mg of Lasix and 20 mg of Metazalone each day to get rid of the water. I had to wear compression panty hose around the clock to keep my feet and legs a reasonable size. Here I was a guy, “walking around in women’s underwear” as the parody words that go with the music, Walking In A Winter Wonderland. (it’s a very funny video you can find on YouTube by searching: walking round in women’s underwear. It sounds like you could use a good hearty laugh about something. Humor heals, or at least makes things more bearable. Get a dose of it everyday).
Hepatologists know about the depression issue. A nurse practitioner told me anybody with a serious illness that says they are not depressed is a liar. That’s true. Once you have admitted that to yourself you can discuss the issue with your doctor or therapist and develop a plan on how to deal with it. You treat it parallel to you PSC treatment.
What you said about the doctor learning from you is very true. My hepatologist said every PSC patient they have had in the program is different. They don’t know how to heal it or even slow its progress, so they just treat the symptoms and monitor the disease. Because there is so few of us, a support group is impossible. He said most liver transplant support groups are made up of alcoholics,and that would be unproductive to attend. I got lucky and found a transplant support group made up of liver, kidney and heart transplant survivors. Rich, my friend and I were the only two still waiting for a transplant. They were wonderful to us. A great support. And, they/we all live in a mostly rural area. Our’s is hosted by a community hospital. You never know where you will find one. Ask at a hospital near you.
Another resource is PSCpartners.org. That was the first place I started getting information from. We got to attend their annual meeting which they hold in a different city each year. For the first time, I met people like me, real fighters though they had the symptoms. As the speakers spoke, we were all falling asleep from fatigue of the disease. We would wake up. Look around and smile that everyone was doing the same thing. It is a great online group with lots of research and current events.
I’ve covered a lot of stuff in a short time, so let me end with just saying this: find a hepatologist and have your medical records, especially your diagnosis, test results and radiologist reports from imaging that was done forwarded to him. Before you move, most hospitals and doctor’s offices will give you a DVD of MRI’s and ultrasounds. Biopsy results and ERCP’s usually go direct to the doctor. Your hepatologist becomes your best friend taking care of you. They know way more about diseases of the liver than a Gastro. Do not let the lack of money stop you from approaching a transplant program. They have ways of taking care of things. Trust. People travel many miles to make appointments at a transplant hospital. Don’t let distance prevent you from signing up. The American Liver Foundation, Helping Hands, United Way, a church, synagogue or mosque a places to turn for people to help you, especially with transportation. I got so bad I could not drive except short local trips.
Pandora, don’t give up. True Grit, Paul