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1

Hello

My name is mark (45). I was diagnosed with PSC in 2002 after an Ulcerative Colitis diagnosis in 1997. For years I would be treated for the UC and the PCS kinda sat there. I had two liver biopsies and two MRCPs I think from 2002 - 2004 but then it seemed to have let me alone, or my GI dr. was just busy with the occasional flair ups of my US. Also in 1997 after the UC, I was diagnosed with Autoimmune Hepatitis. For the past 14 years I would have problems with various things, like my eyes, (Iritis) Arthritis and maybe 2 years ago Barrett's esophagus, (no cancer). all thru this time I would get what I later would find out where Gall Bladder attacks. I would tell my GI they would schedule a sonogram and never find a problem, this went on for several years, the attacks would come and go, I would get sick or take some pain medication and just keep going. Well recently, (March 26) I start getting one of my "Gall Bladder attacks" always starts in the middle of my chest, just to the right and radiates down and then all around my back. I usually grin and bear it knowing that in a few hours it will probably go away. well the next day comes and it is still there, I take some pain meds and it is still there. I work thru that day into Friday, Still there. (after so many years of issues and pain I seem to have just accepted that this is the way I normally feel and just keep going) Friday night it just becomes to much and I go the the ER. Mistake number 1, and I have made this one before. I tell them I am having chest pain, so what happens? I get a complete cardio work up. Guess what, a few hours later I have the good news that my Heart is fine, meanwhile the pain meds they gave me have finally taken care of the attack. I try to explain to him about thinking it was a Gall Bladder attack. He releases me and tells me to follow up with my GI Dr. so I pay the $100 and go home. for almost a week I am fine, I always have a feeling of uncomfortableness in the center of my chest and then my lower right abdomen. So Friday the 4 of April. I drive 94 miles to a school where I am going to work on programming their computer network switches and routers. around 9am the pain starts again, this time comes on pretty fast and strong. I sat there for awhile wondering what I was going to do. I was in a very small town in Ohio. There was a hospital about 10 minutes away, but I decided to make the drive home. That was the most miserable 94 miles I have ever drive. I finally get home and went back to the same ER around 4 pm. this time with 'abdominal pain'.They fill me with pain meds and do an ultra sound of what seemed like everything in me. A little while later the Dr. comes back and says that my Gall Bladder is filled with gunk and has thickened. I think great something is actually wrong and it can be fixed. That's how I feel anymore, I get excited when they find something so I know that the pain is not just in my head and maybe something can be done about it. I am admitted and a surgeon is contacted (and my GI specialist), I am scheduled for surgery for the next morning at 9:30 to have it removed. about 8:00 am they take me for an MRCP to take a look at my liver. What they see is a pretty severe stricture on my common bile duct and then some stones behind it. They are concerned that if they remove my gall bladder they may create a week spot and bile will leak into my abdomen, so surgery is canceled. And they decide that I need an ERCP. I am in a smaller Hospital just outside of Pittsburgh and they don't want to do it there when there are some relly good hospitals just down the road. So a few hours later they pack me up in an ambulance and I am taken to another Hospital. 2pm Sat I am in my new room. It's a teaching Hospital so I end up repeating myself a million times to all kinds of people, I swear nexr time I go I am going to put up a schedule and have a power point ready. The ERCP is scheduled for sometime Monday, so I keep staring at the walls, all the time being denied anything to eat and drink. It has now been three days without food and very little to drink. Finally I get wheeled down for the ERCP. This is the part where I am hoping that some on the site can help me out on. 12:00 they wheel me in and start to put me under, next thing I know I hear faint voices yelling my name to wake up, it's now 2:00, it takes me just about an hour to wake up and have most of my senses back. my throat hurts and I am tired. Take me back up to my room and stare atthe walls again, still no foor or water becasue they don't know if they are going to still take out my gall bladder. Sleep on and off. Around 3:00 am Tuesday morning I need to get up and go to the bathroom, I start to sit up and can hardly move it hurts so bad, I swear ever muscle in my body is sore. feels like I did a tri Athlon the previous day. They must have contorted the crap out of me for those two missing hours of my life. as the day progresses I keep asking every Dr I see, What about my gall bladder, what about my gall bladder. They keep telling me that they will talk to the Dr. in charge.

So to finally end a long boring story, It's wend 8:13 and I am sitting at home, I can barley stand up from the muscle aches and walking is very slow. I don;t want to even think about coughing. I do have a stent in my common bile duct and I also still have my Gall Bladder, and lots of phone calls to dr's today for followups. I was going to go to work today but was threatened by my family and a few friends that I had better stay home.

So sorry for the long note, kinda my history and my most recent issue. But I am hoping that if anyone has had a similar situation, what can I expect next with my liver....

(on a side note half way into this Hospital stay some pretty sever marital issues have arisen and I don't know if that stress is helping at all....)

2

I remember one hospital stay when they would not let me eat or drink for 5 days. I was so filled with fluid (Ascites) that I could not make a fist or bend my ankles.

When the nurse or doctor walk in and ask how are you feeling, I usually say, "Like sh**."

I wish that I could tell you that things will get better sooner then later but PSC is usually a very long road. You'll have good days and bad days. Try your best to enjoy the good days. Having someone to talk to really helps. You may want to speak to a therapist that specializes in people with chronic illnesses.

Keeping you in my thoughts,

Kim

3

There is no doubt that PSC can literally beat you into submission. Before my doctors got a handle on my situation I was hospitalized 4 times in 6 months, before they finally diagnosed my illness as PSC. Every doctor has told me that it is a very difficult to diagnose. Not to mention the fact that alot of the medical profession are not very familiar with it. Most of my friends have no idea what I am talking about, until I mention that Walter Payton was diagnosed with it. Not sure what I am doing right lately, except following doctors orders, But for the last month or so I am doing great. I am lucky. The doctors I see are very well informed and up to date, on the latest treatments.

Stephen Cox said:

My soul Mah, you can't seem to catch a break. I feel so bad for you but it is always good to get home and be in your own bed. They should give you a discount at the hospital ! I hope your spirits are good. Know that we care here. I really hope the next few weeks go better for you. You need a break. PSC can be such a tough disease.

Please take care and update us. Don't feel you ate posting too much. We care.
4

So, I've had stints in my liver before, both internal and external. Both were to open up my bile ducts to put off my second liver transplant as much as possible. The thing with stints, especially internal, they tend to get clogged pretty easily. After having mine in for about 6 months, I had some severe pain were my liver is, didn't take any pain meds that day, went to bed and woke up and the spot were it hurt was bright red. Went on with that day, next morning it felt like someone was pushing from my liver outwards with something hot, and it was like a greenish black. Went to the ER and, after getting my vitals and sitting in the ER room for about 5 minutes, my side felt a million times better. Not seconds later my shirt felt like I dropped some warm gravy on it, I looked to were this sensation was (you guessed it, where my liver is) and it was flowing with thick, gooey bile. The stint had become so clogged that the bile took the path of least resistance (a scar where an old drainage tube had been during my first transplant). After about 15-20 minutes I finally got it to stop gushing out. That was when the external stints went in. They had to change those every 2-3 weeks. I REALLY REALLY advise against internal stints. External stints aren't much better, a bigger chance of infection. However, taken care of properly, they do last (mine lasted nearly 2 years without much incident, I had one infection, however, the doctors said it was very unlikely that it came from the external stints).

5

Well, it may be a solution for some, as it seems it was for you. I hope you start to feel better and gain an increase in energy. I have just recently (the last week or so) begun to feel more energized myself. 10 weeks after my second liver transplant I was able to see and touch my liver. I will see if I can post them in a new message. After seeing, touching and comparing my old liver to one that was "normal", I couldn't believe that it was still working. The pathologist who showed it to me said in his 42 years of working as a pathologist, for a number of hospitals, my liver was the worst he'd ever seen.