Greetings to all,
Let me start with an introduction. I'm Russ, recently (Feb. 2015) diagnosed with PSC. Also diagnosed with UC in Jan. 2014.
Thank you to everyone here who have been so open with your personal lives. I've been reading a lot of your posts. You're truly an inspiration. Now where do I begin? I'm guessing the beginning is always helpful.
Back in Sept. 2013 I began to experience some severe gastrointestinal problems. Without getting into too much explicit detail (not a pretty picture) I finally went to see a GI specialist sometime in November 2013. So I suffered for a couple of months before determining that this was no passing malady. The GI doc did blood workup and I was to see him again in December. This is where the proverbial manure hit the rotary blades..
We had a snowstorm here in NY mid December. I was outside clearing snow off the cars. Just a broom cleaning as I can't do anything strenuous due to severe chronic back problems. I mention this because this was the last thing I did before my life was turned upside down. Upon entering the house I began to feel a pain in my chest. It felt like I was having a heart attack (from what I hear, as this was the first time I've ever had a pain like this). Note, at the time I was 54 y/o. I told my wife what was going on. We called 911.
Fast forward to the emergency room. My heart was and still is fine. No heart attack. However, they did a plethora of tests, both blood and sonograms. This is when I was informed that my alkaline phosphatase was 687. I was released and told I needed to see both a cardiologist for a nuclear stress test (bad back wouldn't do well with the standard cardiac stress test) and a Gastroenterologist. Stress test fine. Cleared to proceed with the GI test. At this time the GI doc did a colonoscopy and endoscopy. Feb. 2014, diagnosis is UC, diverticulosis, swollen sphincter of Oddi. Treatment was prednisone for about one month. Alk Phos came down. Prescribed Lialda for the UC. It has worked great to this date. Stopped the prednisone and the levels began to rise. GI doc is doing his due diligence and not jumping to any quick diagnosis. Lots of blood tests (every month at this point), ERCP, MRCP, liver biopsy, and probably more things I just can't recall anymore. It was at this time he recommended going to a hepatologist.
The hep doc started doing blood tests every two weeks. Put me back on prednisone. He did another liver biopsy with his team as well as reviewing the first one of course. Switched me over to budesonide instead of the prednisone. Enzyme levels came down slightly. Nothing to impress the hep doc. He then added 6MP to the budesonide. Enzyme levels began getting worse. Now he was afraid of drug induced liver disease. Stopped 6MP.
It is now Feb. 2015, about 14 months since my 'heart attack' episode. The hepatologist finally felt comfortable labeling my symptoms as PSC. He gave it a stage 1 which is why I believe he had such a difficult time diagnosing it. Various issues with this particular doctors support staff/office so I switched hepatologists in June 2015.
Had my quarterly visit with the new hep doc last week. My enzyme levels have spiked to levels that are very concerning to me, but apparently not to her. My alk phos is back up to 578 with my ALT at 225 and AST at 202. Do any of you folks feel these numbers are a red flag that warrant a more serious discussion with my doc? I have not had any jaundice, vomiting, diarrhea. The only noticeable symptoms I can claim are fatigue and itching (on my back, mostly at night). Other than that the only indicator that I have a diseased liver is because my doctors tell me it is.
I have adjusted my diet. Unfortunately it is a severely limited diet because of the combination of PSC, UC, and diverticulosis. I'm quite sure most everyone here is aware of the dietary restrictions. It doesn't lend itself to much of an appetite. I dropped 40 lbs since Feb. I feel as good as I have felt in 10 years. I've begun to swim again. I was a competitive swimmer back in HS in the 1970's, so swimming is a natural sport for me. I can't do any other sport due to my back, so this was a blessing. I figured if I have to be put on a list one day I didn't want them to tell me its time to get in shape. I want to be a good candidate for a transplant as well as be as fit as I can to make recovery as problem free as I possibly can. I'm finding there are so many things in this life I don't have control over, the few things I can control I MUST control (meaning my fitness/weight).
My wife is amazing. I bring her to every doctors appointment because I listen to the doctors, but it doesn't appear that I hear the doctors. She is introduced to them as my PCP (Primary Care Person). Without her I'd be a goner. I've been blessed with her.
Back to my current levels. They scare me and I'm hoping someone (or a few of you) can add some insight to this spike.
Thank you all for listening to my rant. Thank you all for your support. Thank you all for the compassion I've seen through your posts.
Please all, be well,
PS - Happy Halloween