June 2008 Update

It’s been just over 3 months since my last visit to Baltimore and my last update email. This morning, with one of my daughters as my co-pilot (she skipped a ½ day of school), we set off for Baltimore and my next checkup. For an executive summary, the worst thing all day was paying $80 for gas for the round trip to Baltimore. Otherwise, things are going very well.

Normally my appointments are early in the morning – 10am or earlier. When we normally arrive, there’s maybe 2 other people there. Today’s appointment was for 11:40 and when I arrived, the waiting room was buzzing with activity and 15 or so folks there. Even with how busy they were when I got there, like every visit over the past 18 months, I’m treated by the office staff as if I’m the only one there. They know me by name, ask me how the ride down was, ask me how things are going (and where my wife was this morning), etc. They are a fantastic bunch of very caring people at the Johns Hopkins Scleroderma Center.

I had the standard weight/blood pressure/temperature readings and then we went into an exam room. One of the doctors helping out came in and asked me all the standard questions. This other doctor was one who I had seen last Sept. She asks how am I feeling, if anything changed (for better or worse), need any prescriptions (I needed a renewal for my monthly blood work), and tested me to rate my skin across my hands, arm, face, chest, back and legs. Since I know that how they rate me is the main question Dr Wigley asks them when he comes in, we discussed what she was going to say since I’m pretty accurate with rating and I remember what it was last time. That prep paid off for her since she nailed her rating with him.

Dr Wigley came in and was smiling as always. He asked my daughter if she wanted to be a doctor and she said a fashion designer. He said maybe she can design a Scleroderma shirt. We reviewed what we discussed with the other doctor. He then checked me out, asking what the other doctor thought and she was dead on for rating my skin. The only place where there’s anything worth noting is my right hand and my face. Otherwise, they consider my skin close enough to normal everywhere else. Still no wrinkles – the only benefit of scleroderma. The primary medication that I’m on (CellCept) was previously reduced from 6 a day to 4 a day. It is now reduced to 2 a day and what he considers moving to maintenance level. He also eliminated me taking Bactrim 3 times a week which is supposed to help prevent infection while I’m on the CellCept which suppresses my immune system.

When we were done with the exam, I told him it’s becoming a rather boring checkup and Dr Wigley said “I live for boring!”. For having a disease that can’t yet be cured, I’m probably as back to “normal” as I feel I could possibly be. A year ago, I couldn’t stand for the length of time it took to go food shopping and a year later I can walk 5 miles in a day without breaking a sweat. A year ago I would have to stop multiple times each direction driving to/from Baltimore and a year later I can drive straight through. A year ago when I moved my wrist or ankle you could feel and hear my tendon rub and a year later there’s no rub. A year ago, I couldn’t break 80 in golf and a year later I still can’t break 80 in golf, so I guess things are back to “normal”.

After the exam I gave 4 vials of blood for research and walked for 6 minutes where they test for breathing difficulties. Then I set up my next appointment for 6 months from now, so I shouldn’t need to head back to Baltimore until Jan 2009. Gas could be $5+ per gallon by then. Today’s visit marks 18 months since I’ve been under Dr Wigley’s care and in 18 months we’ve gone from a scary unknown very real life threatening disease to having things under control, no significant damage and I’ll probably live to be 100 if my kids or the NY Giants don’t kill me.

So that’s all I have for now. I’d like to thank all my friends and family for their constant encouragement and support. It’s been really tough at times but I’m hopeful that the worst is behind me and though it won’t go away (unless they come up with a cure), it’s just a nuisance I’ll be able to deal with. Have a fantastic summer!!