Tuesday, April 08, 2008

What a weekend!

Friday I flew to Dallas for the International Pemphigus/Pemphigoid Conference. I checked into the hotel and went to the Welcome Reception. I promptly realized that this was going to be an amazing weekend. I met and talked to at least 5 people in those 2 hrs alone. Everyone was so open and friendly and I got a chance to talk to two of the physicians right away. I walked out feeling just that evening was worth the $ to go!

Saturday we all left to go to Univesity of Texas where the lecture/discussion took place. We had a welcome breakfast, then hours of different presenters and Dr's and snacks and lunch and more snacks. They fed us very well, and kept us supplied with a variety of beverages as well. The Dr's answered questions and it was far more interactive and intimate than I expected. We had about 70 participants, including spouses/caregivers.

Saturday evening I met up with my online friends from my "baby" playgroup and we had a great time out to dinner. It was so nice to finally meet Kelly and Ann in person!

I learned so much that will help in my treatment. Sunday I went out for breakfast with two new friends, then over to the conference for more presenters and discussion and questions. I got to speak to a total of 5 Drs for about 10 min each and they all told me to go see Lynn Morrison. Two of them had worked or gone to school with her. As it turned out, the Dr that My derm made me an apt with at OHSU is the same Dr so I'm in good hands :)
The only rough part about the conference is that I pretty much couldn't sleep. Thurs I got 0 hrs, Fri 3, Sat and Sun 5 hrs each. Luckily I felt o.k. despite that, even getting new blisters Thurs, Fri and Sat. Prednisone can make it hard to sleep and I am on a high dose for now. I slept much better Mon, with 7 hrs.

Sunday afternoon I met another online friend Shiela for a tour of Dallas and dinner. She is a professional geneaologist and we had a grand time talking about our enjoyment of finding hidden family treasure. We walked around the art area and I had the opportunity to take photos of the loveliest little Catholic Church that had the same layout as the church where Lane and I got married. It had incredible stain glass windows.

Monday was my birthday and I flew home, then we went out to dinner to celebrate with my dad and grandma. I didn't feel like it was my birthday until I got home. It was so nice to see Lane and the kids!

Since I had an Apt today in Portland, I quickly bought plane tickets and flew up today. It was going to cost me about the same with hotel, gas, etc and I knew I was in no shape to drive after the sleep deprivation I had all weekend. I got off the plane, and took the light rail train downtown, then caught a cab to the OHSU Dermatology Clinic. I was very impressed with Portland's mass transit! They have a tram that I could have taken directly to the clinic from the light rail if I had known about it. I took that on the way back.

I met with the Dr and about a million residents. I was quite on display :lol They were all very impressed with my rash and blistering and took pictures. This dermatologist was highly recommended by the Dr's at the conference. 2 of them had worked or gone to school with her. So I got lucky that my local derm got me in to see exactly who I should see in OR. She had them take a few more biopsies (to rule out a few other possibile things and to re-do the Pemphigoid biopsy) and blood and is switching my meds to Cellcept which is what I wanted, and lowering my Prednisone to 100mg.

We also agreed that I need to see an Endocrinologist to monitor my endocrine system and minerals, etc because of the high Prednisone dose, and get a bone density scan and to go on Fosomax to preserve my bones from the effects of the Predinsone. She says if I don't respond to Cellcept, we'll try Dapsone next, and then Retuximab which the Ins won't want to pay for at $30k a month :eek She is also open to trying the IVIG if we need to. She says that the ins co will come around because of the pics. BP is usually much easier to treat, often just with medium to low doses of Prednisone so my pics are pretty dramatic and she feels that should convince them it's needed if we do need to go that route.

I feel I am in very good hands and I am really hopeful that this other drug which is considered quite safe will knock this thing out! I will be emailing her and calling her with updates, and see her in person in about 3 months as well as seeing my derm here.

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