Thursday, September 20, 2007

End of summer scleroderma checkup

Wednesday my wife and I woke up early and set off for another visit to Johns Hopkins Scleroderma Center to see Dr Wigley. On the way down, we heard on the radio that it was International Talk Like A Pirate Day - . Maybe everyone should put this important day on their calendars for next year.

Every time we go in the exam room, Dr Wigley has a different 'student' who is a real doctor, working with him, that meets with the patient first. The student comes in and does the pre exam, asking general questions about me and doing an exam. One part of the exam, which I've previously mentioned, is where they score my skin on a scale of 0 to 3 with 0 meaning normal and 3 meaning severe damage. They check my fingers, hands, arm, legs, face, chest, etc. Well, I know my score (as does my wife) since they do it every time. After they are done, the 'student' comes back in with Dr Wigley and he always asks the student Dr to explain their scoring. Well this time, the other Dr didn't do so well but it is always the part that is most subjective and where Dr Wigley usually disagrees with the student. Next time we might feel bad for the 'student' and give them some hints to help them out. Or maybe we'll make cards like they used to hold up in diving competitions and after the 'student' rates me, we'll hold up the cards with the right number. If you really wanted to know, my right hand is a 2, my left hand is a 1, my forearms are 1's, my upper arms 0, my face is a 1, my chest a 2, my abdomen a 0, etc.

The overall visit went well. Dr Wigley is pleased that nothing appears to have gotten worse and he feels there might even be slight improvements. We need my latest lung test to get sent to him so he can compare the results to the previous tests and make sure nothing is going on inside. But otherwise, though I'm not better by any stretch of the imagination, it is pretty good news.

The major medication I'm on is CellCept which interacts with the immune system. I was taking 6 pills a day for 6 months. Dr Wigley reduced it to 4 pills a day. That means I still pay $75 for a 3 month supply which goes for $2700 but insurance gets a break and that medication only costs them $1800 now for 3 months. Thanks to Roche Pharmaceuticals for the medication!

We spoke with both the student doctor and Dr Wigley about my overall abilities. If we use a scale of 1 to 10 with one being poor and 10 being great, they indicated many patients are at the low end of the scale while I am toward the upper end. And though I used to be a 10 (hiking 20+ miles over a weekend) and now I'm more like a 7, compared to the average patient, I am much better off. Many days, at least until it gets too cold, I walk about a mile each way to/from work.

My wife and I think Dr Wigley enjoys meeting with us. First off, we're relatively young compared to other patients. I'm in comparatively excellent shape (for a guy with an incurable immune disease) compared to others he needs to deal with so it's (knock on wood) not a depressing discussion. We always crack jokes with him (would you expect anything less) and the student doctor so it's a pretty relaxed exam.

At the end of the exam, Dr Wigley indicated that he feels based on how I have so far reacted to treatment, that things should, over the long haul, start to show signs of improvement. Last month on vacation I actually played a round of golf after 2 years. I went with my brother in law, one of my nephews and my older daughter. Using my other nephews clubs I was a bit rusty on the front nine but on the back nine I started off with a birdie with a par or two and ended with a 45 on the back. My hands were pretty sore at the end but the clubs never flew out of my hands. Hopefully next summer things will continue to improve and I can get out a couple more times. I'm also hoping I can ski this year since last year it just wasn't possible.

We'll be heading back to Baltimore for my next follow-up the beginning of December so if nothing exciting happens between now and then, have a fun Halloween, a Happy Thanksgiving and I'll check back in December.