I feel lost

I am so lost... There is no one to turn to for answers.

I am shaky to the point of being twitchy in my hands, dizzy, unsteady on my feet - exhausted OR an insomniac, swollen/fat, retaining fluid... My gastro won't see me because I owe the office money and I can't afford to pay him... Supposed to be packing and getting ready to move and haven't the energy to do it.

WHAT DOES IT MEAN???? Am I closer to transplant? That would be bad - I haven't had my teeth done. Is it just my cell counts? Will my FNP run tests to help me find out??? Will I find a new gastro in Albany with ease? Is this move a good idea??

Can anyone help me??????????????????????


Sounds like stress is taking over. Do you have family or friends? It sounds like you could use a break. Is there anyone that can take care of you for a little while until you get your feet back on the ground?

I live alone and my nearest relative distance-wise is my Mom, who is 78 and has cancer. I am getting ready to move in with my Beloved, Tom, but we are only 15 months together. He doesn't understand most of what is going on with me, and relying on him will take time. As for friends, the one I can always count on is about 3 hours away - the good thing is that she becomes only 1 hour away when I move. She will be attending my transplant if and when it happens and has been my go between for doctors when problems like this arise in the past. However, aside from the distance, she has a mental health disorder, and is going through her own troubles right now... So, in short, not really. Now, I have the added worry of packing my apartment and clearing out my storage space in 30 days - pretty much alone. I just feel so completely screwed - yet, I don't want this disease to hold me back from experiencing my life and making changes that will ultimately benefit me.

I need deserted beach scream therapy!!!!

You sound better today. One day at a time. I know someone who had a transplant not too long ago and just packed her whole house by herself. She's out of State from me. You all are amazing.

Have you tried vancomycin? My daughter has taken it for about 3 months and GGT levels have dropped nearly 400 points.

Hey Pandora help is out there sometimes you have to search for it. Have you tried checking in your area for an actual support group you can attend in person? Not necessarily for PSC but for organ transplant. In my case we go to one once a month, it has been a great help to me and my husband, as well as meeting some really great people. Even if i feel like crap i drag myself to the meetings becuz i know there are people there who care about me. I have been listed for three years now and even if i wasn't listed i would still attend these meetings. There is so much information to learn as well as interacting with people. Sometimes you just need a hug and some kind words. I would definately check with your dr or hospitals in the area.

hope this helps


ps. i send you a virtual hug!

Awesome Cathroy

Great idea. My University hospital has a program as well. I think I'll check into it. I see transplant for a check in a couple of weeks. FANTASTIC. Go for it Pandora. People really are good and like to help. Hugs to you both!!! mona


You need the care of a hepatologist if you have PSC. They are a gastroenterologist that specializes in diseases of the liver. Google "transplant hospitals" and contact one near you. Tell them your circumstances and if they will see you. Don't neglect your mental health, as well. All of us that have had PSC have faced, panic, fear, depression and anger.

Cathroy and Paul, I am prepping to move and change cities. I don't know who I will have for a PCP or a gastro. Paul - I have never thought of having a hepatologist! Sometimes I feel as though my gastro is just guessing - maybe a hepatologist would be a good addition to the team! As for my mental health, I didn't realize that we suffer such wild swings and that it is considered normal. I already am diagnosed as clinically depressed, but the addition of this disease and my unending battle with ammonia levels, I may consider going back into therapy. I saw one for a year, and left 2 years ago because I was doing well - had the tools I needed for that battle... Since I have gotten sicker, I should seek out another therapist. Cathroy, there are no groups in my current area. It's limited in everyway - I say "liver transplant", and I automatically am an alcoholic. There are no open minds. But, I am moving to Albany, NY, area, and will have much more at my disposal. No one gets the anemia or the ammonia, or that I retain a lot of fluid in my abdomen and my spleen is HUGE... I am hoping I can be around some more understanding people upon moving.

Thank You ALL so much!! Your caring means so very much to me... I wish you all more good days than bad, and support from unexpected and welcomed places!!


First get moved. Then figure out your insurance/credit situation. Make sure you are taking care of yourself in the meantime. Baby steps girlfriend. Hang in there.

Yes, a Hepatologist is a must. Find out what assistance they have and move forward. Take ALL your chances moving forward [don't look back~it doesn't matter].

Hugs: mona

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