Man, oh, man - what a week and a half...

[Guest guest]

Hello everyone,

I just joined this group last week. My husband was diagnosed with PSC

in 2002 and has struggled with it since then. I didn't really expect

to post anything so soon, but you all sound so supportive that I felt I

had to tell our story. Plus, I had to tell someone who would actually

understand it!

About 12 years ago, he had his gallbladder removed. Little did we

understand that this was just the beginning. We now believe the stone

blocking the duct was not coming from his gallbladder, but traveling in

from his liver.

After his initial ERCP, he felt much better but continued to struggle

with his diet. In addition to PSC, he also has IBS, and so a lot of

good foods really messed with his digestion. Until his specialist

prescribed WelChol this winter, he could only eat 3 vegetables. Now he

can eat more, and has been able to gain weight. This drug made a huge

difference in his quality of life - and mine!

The latest issue started the Saturday of Memorial Day weekend. He got

a fever with no other obvious symptoms of being sick. We live in

Denver and my husband is treated by Dr. Philip Hanna. We called his

practice and were told to go to the nearest emergency room and get a

liver panel run.

We were there for 9 hours. He was put on i.v. antibiotics after his

liver panel came back with high numbers. They felt he had an infection

and thought they could knock it down with the i.v. and oral

antibiotics. We went home feeling better, that we survived this new

experience - if he'd had an infection before, we'd never gone to the

hospital for it - and confident that he would feel better soon.

He continued to take his antibiotics as directed, and felt really

fatigued all week. He went to work Monday morning. Our 20-month old

son was sick in the middle of the week, and he was able to help me tend

him. Our 12-year old daughter graduated from 6th grade Thursday, and

we attended the celebration together. Then Friday, while he was still

on the antibiotics, he got another fever.

We were totally confused...how could he get a fever? So, again we

called Dr. Hanna's office, and were told again to go to the ER. This

time, they admitted him. He was there from Friday afternoon until

Sunday afternoon. They did a chest x-ray to rule out pneumonia. He

didn't have it. They did a CT scan and an MRCP, and just like the

first time, those were inconclusive. Meanwhile, all weekend, they kept

pumping in the antibiotics.

Due to the tenderness in the upper right quadrant, they still believe

he had an infection. We still have questions.

We saw Dr. Hanna Monday morning, and he ordered an ERCP right away.

Ian went through the procedure today. He had no blockages, no stones,

no strictures, and it appears the infection has cleared up. So what

happened? That's why we still have questions...

Ian has a liver biopsy scheduled for next Monday afternoon, and after

that, we are to schedule an appointment with the University so my

husband can get on the transplant list. Dr. Hanna thinks transplant is

a long way off, but wants to get Ian in there now so they can learn

about him.

So, now you know our story. Hopefully, we can get some answers in the

next week or two. I am interested to see what the transplant team has

to say.

Thanks for listening! Hopefully, in the future, I can participate

fully in the conversations here. It helps me to read what you are

posting, to learn more about the disease and to see what we could

posibly be facing in the future.