Do not feel shamed that you have PSC. My arms and hands are easily bruised and cut. It takes much longer to heal because of PSC. You have less red platelets to clot bleeding. (building block for new cell generation) normally form around a wound to help it heal, but with PSC that process is reduced. Washing washes the leukosites out of the wound further delaying healing. It is painful, both physically and emotionally.
I’m a teacher. When I learned I had PSC, I decided to go public and tell people about it so that they understood. I say it is a degenerative liver disease of unknown origin. I tell them it causes cirrhosis but is not caused by alcoholism. It has no known cure except a transplant. I have lived with it a long time and never get a high enough MELD score to qualify for a cadaver liver transplant. People are supportive and compassionate. I don’t ask for or want their sympathy. I just want them to be informed.
I force myself to be normal and active. Neighbors and friends notice the muscle wasting and fatigue in my eyes, but I don’t give up. I tell them if they want to do something positive go an sign up at the DMV to be an organ donor. I’m not above asking for help if I’m not strong enough to do a job in the yard. My doctor does not want me to drive any more because I have become so impared. People around me have offered to drive me places. Occasionally, I have taken them up on that offer. I do drive, but I stay local. My wife drives me if I need to go places further away.
Don’t be embarrassed or ashamed of your looks. You are a whole person. You are what you are. Like you said, be grateful for the day and let people see your enthusiasm for life. They respect courage in the face of adversity. As bad as this disease is, it can make you a stronger person, someone who is admired for you fortitude, so don’t let it get you down.
I went through the period of worrying about my fate. I could not get early death out of my head. I was angry that this disease happened to me. Then one day after months of that, I said “the hell with this. I’m going to stop my fearful thinking and stop feeling sorry for myself.”. Accept what is, but don’t give into it. My life and physical state got better immediately. For me, that’s the only way to go. Who cares what other people think. I don’t hide it, nor do I care if they pity me. I’m not looking for that. I don’t like it, but that is the way some people are. So what!. If you are living near a transplant hospital, ask your doctor for a referral there so they can answer questions about changes you are experiencing and what the future holds in store. Chance are they will dodge the latter. But, they will get to know you and get you enrolled in the transplant program when that time comes.
Cirrhosis stages are not all that important. I went to a PSCPartners conference and met others with PSC for the first time in my life. We were all falling asleep and eating like birds.it was funny in a sick humor kind of way. Finally, I felt I was not alone. www.pscpartners.org I met a young man with Stage II and he was in worse shape than me with Stage IV. I have a MELD score of 16. My PSC friend had a score of 8. Physically, we were in about the same shape. He got a live donor transplant 8 weeks ago and looks good. He immediately felt his energy come back. He has a normal appetite and he can now sleep without the need for sleeping pills.
I wish you the very best. Do not ignore the spiritual you and accept that your emotional ups and downs are normal with chronic diseases. I have them. I know it, but I try not to stay down in the valley of darkness too long. Find something to be grateful for each day. It tunes up your thinking. God bless you. I’ll keep,you in my prayers if that is all right with you.
Unfortunately I don’t have an answer to your question. I’m still trying to figure out my stage. Hopefully your doctor can provide some insight.
I apologize to all for all my questions! Although I’ve been diagnosed for 4 years now – I’m just not starting to be more open about having the disease – not that I hide it from people, I just talk very “matter of fact” about it like it’s ordinary to avoid pity stares and always being asked “how are you feeling”.
I have found that this disease has a huge emotional burden and just wonder how all of you deal with it on a daily basis. I try to tell myself daily that “hey you’re alive today – make it great” – but sometimes it’s just frustrating beyond all reason and I’ve had my share of (private) emotional breakdowns.
One of my issues is that I have a rare form of folliculitis (inflamation of the hair follicles) – so since about age 13 (2000) I’ve had random lesions and so forth on my arms and legs (very difficult to hide – and people do stare on occasion). I had it under control for a while but it seems I get zit-like bumps on my skin which eventually turn into scabs. I was told by my doctor that due to the PSC my body’s ability to heal is greatly reduced. So, while it may take a “normal” person a week for a cut to heal – it will take me several months. Does anyone have any suggestions? I’ve tried neosporin and bandaids, lotions, creams, etc – nothing seems to work consistently. I’m not sure if this is a normal issue with PSC – but I had UC so bad that lesions were erupting on my skin and now they’re just annoying. Plus the itching doesn’t help as I find myself ripping open scabs during the night when I wake up itchy.
Thanks again for all your help and insight!