Dear F&F;
Irv and I returned home late yesterday evening after spending 3 days in Seattle at VM. Irv had a liver biopsy done on Wed. and then saw two doctors on Friday. The biopsy results weren't available on Friday. We felt the trip was about 90% needless.
None of Irv's symptoms, biopsies, blood work, CT's, MRI's or ultrasounds point to one specific diagnosis. Dr. Gluck has presented Irv's case to several groups of doctors and will again after the liver biopsy is done.
Right now, the best guess is that Irv has "autoimmune cholangitis" which is inflammation of the liver and bile duct AND a retroperitoneal process that caused the small bowel blockage. The two are immune processes and can be related to each other. He may have "NASH" which is nonalcoholic steatohepatitis. What that is is fatty liver with inflammation. Again, we await the liver biopsy. All of these "diseases" are very rare, occurring in only 2-4% of Americans. Isn't Irv lucky?
The worst problem is that all of this can lead to cirrhosis of the liver due to the constant inflammation. Every time the doctors try to decrease his prednisone dosage his liver enzymes shoot up meaning the damage is accelerating. So, he is starting the azothiaprine, which is a drug mainly used as an anti-rejection drug for organ transplants. (The genetic test still isn't back but should be shortly. The chance of it being positive is very, very rare so the doctor said go ahead and start the drug. Irv wouldn't be taking it for very long if the test does come back pos and he can stop the drug.) This drug is "steroid sparing" so most of the side effects the prednisone has would be gone. If the azothiaprine doesn't stop the liver damaging itself we weren't told what the next option would be.
Blood work done every two weeks will monitor the liver enzymes and determine how quickly Irv can decrease the prednisone use, hopefully stopping it in a few months.
It is hoped that the azothiaprine will calm down the immune system enough that in 1-2 years, Irv will be able to go off the drug and remain healthy.
Irv is feeling 80% well, but doesn't have much stamina or desire to get out and do much. He did leave today for Nehalam, OR to stay with our friend Jerry Nevin. (Jerry and Wendy had a home built there a year or so ago, Jerry just retired from Federal Way Fire, Jerry came to house and dog sit while we were in Seattle and now the "boys" are off on an adventure.) This next week is "low tide" time on the coast so they are going to dig razor clams by the zillions - I hope. We love those clam-o-lahs. (Wendy hates them so Irv and I get almost all of them! Yeah!)
Meanwhile, my annual mammogram on the remaining breast was fine. I also had a bone density test done and I have improved in all my bones scanned except the "neck of the femur." It was slightly worse and means I still have osteopenia. (The daily chemo I take decreases bone density.) My blood tests for Vitamin D, thyroid and calcium showed a pretty high calcium, which could mean hyperparathyroidism. So I had to have a PTH test, which was normal. Now, the doctors have to decide if the high calcium is something to explore. Rats! I feel just great.
That is our news. We wait for phone calls next week about the liver biopsy and Irv's blood work in 2 weeks, and then in 2 week intervals while he (we hope) steadily decreases the prednisone dosage.
Love to you all and thanks for your concern and support. It means a great deal.
Penny
