Summer 2011 Update

All of my father's tests came back negative. They eventually diagnosed him with BOOP, which is more of a description of symptoms than an explanation for what is wrong. In other words, "They have no idea." They put him on Prednisone, which seemed to fix his lung problems, but caused all sorts of other problems such as muscel weakness and pain, shaking, severe mood changes, insomnia, etc.

Then my dad's GP reduced his dosage of Prednisone and my dad's joints "locked up". Even after weeks on the reduced dosage, he was unable to move. I think the reduction in Prednisone was too fast, but the GP said that is the schedule he always uses. He tried to make the taper longer, but my dad kept getting "locked up" and the GP would have to raise the dosage again. This went on for months until the GP eventually referred my dad to a rheumatologist.

The rheumatologist said that he had very rarely run into patients who just had a terrible time gettnig off of the Prednisone and suspected that my dad had the same issue. He tried to put my dad on azathioprine as a replacement to the Prednisone, but it caused abdominal swelling and liver toxicity. The doctor obviously took him off of that immediatly.

The rheumatologist then just set a really really slow taper schedule and after about a year, my dad was able to get off of the Prednisone. It was a really bad year though. I think my dad's health is not as good as it once was and we still don't know what happened.

In other news, I am doing very well. My baby girl is now a 4 year old preschooler. How time flies!

When I was very ill with the Wegener's and immunosurpressed, being able to travel seemed like something I might never be able to do again. I regretted that my husband and I had not ever gone on a cruise and that I had never seen Alaska. I am more than happy to say that we have an Alaskan cruise planned for next month to celebrate our 10 year anniversary. I can't wait.