9 years ago, a VERY long story

[Guest guest]

I don't post often, but I wanted to share my story with some of you. All of the old-timers -- the ones who were here at the beginning of this group -- will remember me. I am, by no means, the average PSC patient, but there are parts of my story that might benefit you.

Nine years ago this week I was as sick as anyone could be without having had a transplant. I had just undergone a seven hour surgery (a hepaticojejunostomy) and things were pretty grim.

My story begins with the surprise diagnosis of PSC after an ERCP to remove gallstones prior to laparoscopic gallbladder removal (postponed) found evidence of PSC (the only hint of a problem was a sudden spike in my cholesterol). The first ERCP caused pancreatitis and a 12 day stint in the hospital. During that ERCP, my GI thought he "saw a dominant stricture" and decided that he had to do another ERCP after I recovered from the first.

The second ERCP went quite well, EXCEPT that it seeded a nosocomial infection that simmered for over a month until the best guess was that my gallbladder was acting up and needed to be removed. Two days before the scheduled surgery, my temperature went from "normal" to 105F within 35 minutes. It was a Sunday and I couldn't find a doctor who was familiar with my case so we got an Rx for a short course of antibiotics to tide me over until morning. Had I known better, I would have gone to the emergency dept.!

The next morning I was admitted to the hospital and surgery followed the next day. The surgeon took a look and saw what he thought was cancer all over my liver. In fact, it was liver abscesses and my CBD was eroded from the infection. I was fighting for my life. The transplant team was called in and two of those surgeons did the hepaticojejunostomy.

I was bombarded with antibiotics and managed to go home for about a week, but I had to be re-admitted due to ascites. All totaled, I spent almost a month in the hospital. My recovery was slow due to the ravages of the infection and the effects of one of the antibiotics, gentamicin. I had no measurable vestibular function -- I could not sit up or stand up without help. My inner ears were severely damaged. After 5 months of vestibular re-hab, I was able to stand long enough to make a simple meal for my long suffering (The King of the Grill -- thank heavens!) husband. I was lucky to reach the doctor on call in the infectious disease dept. who actually listened to what I was telling him and diagnosed vestibular loss. I had to be de-sensitized to sulfa, the other drug most effective against the bacteria. I was on high dose sulfa to beat back the infection. About 6 months later I began having chills and fevers with great regularity and a scan showed two masses in my biliary system. The interventional radiologists were planning to place a stent during a PTC to make me comfortable, but I insisted that they call the infectious disease doctor and have him authorize a culture of the bile. Rather than the "cholangiocarcinoma" listed on the procedure board, it turns out that I had two peanut-sized fungal masses in my liver as a result of the sulfa. A hefty course of Diflucan got rid of them.

To make a long story short, there were times when I was in the hospital so often that it seemed routine and familiar -- NOT a good thing. A series of PTCs were done and we did cultures each time as insurance. What turned things around for me? I don't know, but I believe that the lack of invasive procedures (the GI is 5/5 in disastrous or bad outcomes with me) and trusting my instincts. I asked for permission to take SAM-e for my fibromyalgia and was given the go ahead. It may be coincidence, but the combination of the SAM-e and no invasive procedures -- in addition to all of the Urso, etc. -- seems to work for me. I have no intention of changing the regimen.

What I have learned along the way is that doctors who listen can make this disease easier to manage. I trust my "gut." I know what feels normal to me and what does not. If I ever need to have an invasive procedure, I will insist on a culture -- even now. My latest blood work shows virtually normal numbers except for the alk phos at 164.

Nine years after nearly losing the battle, I am grateful to be here. Each of us is different and the course of our disease will likely be different too.

I sometimes wonder if I would have had a much more "normal" life if I hadn't had the second ERCP to find the stricture -- as it is, I need to use a cane to keep my balance. Oh, that stricture? He never found one!

Penny