2009 update - Johns Hopkins visit

Happy New Year all !!! I hope you all had a happy holiday too. Today was my latest visit to the Johns Hopkins Scleroderma Center in Baltimore, MD. I left early this morning and got there in plenty of time for my 10am appointment. My blood pressure and weight are all normal. Too bad I’m sick or I’d be a heck of a healthy 45 year old guy. Dr Wigley came in and we chatted about the past 6 months since my last visit. We reviewed the medication I’m on, any changes in my condition (skin, breathing, pain, etc). For everything he asked, he checked off “normal” on his long checklist.

Dr Wigley then examined me from head to toe checking the skin on my fingers, hands, arms, face, chest, abdomen, legs and feet. He said everything looks fabulous. After I got dressed, he came back in and his first question to me was “What do you think about stopping the CellCept?”. That’s the medication that is suppressing my immune system so it doesn’t over produce collagen, which is what was happening and the cause of all the damage. I didn’t answer right away and he quickly jumped in with “I know it’s a pretty tough decision to stop taking something which has helped so much.” I asked what is the downside of continuing taking it and he indicated there’s a higher risk of some cancers. The immune system, which we’re suppressing with the CellCept is also responsible for good things, like preventing cancer. He indicated that about 80% of the folks that stop taking the medication do not see any additional flare ups, while 20% that stop the medication do see some flare up. To put it differently, from this patient’s viewpoint, there’s a 1 in 5 chance I could get extremely sick again. So what we decided was to get a Pulmonary Function Test (PFT) to check my lungs as well as a catscan to check for pulmonary hypertension, both which I do at least once a year. If they come back normal (and all previous times they have), we’ll discuss either stopping the medication or going to ½ the dosage I have now, which is 1 pill twice a day (down from 3 pills twice a day at peak). He indicated that we’ll make the decision after the winter is over.

After we finished up, I had to walk for 6 minutes for one of the research studies they are doing. They check your breathing after the 6 minutes. The woman indicated I walk the farthest of all her patients. She tracks how many “laps” I do. I asked her how far and she told me the number of laps. So then I said it was about 10 yards (golf paces) and each lap is a back and forth for 20 yards. She looked at me oddly (nothing new there) that I would be able to measure distance in yards by taking steps. I guess she never played golf.

So physically, it seems I’m doing great. Of course I still have the damage done during the first year before things started to calm down, and I’m hopeful that over time that might improve on its own or some medication is found to help the body repair itself. We’ll just have to see. I’m not thrilled with stopping the medication, and that’s coming from someone that never took medication for anything before all this started. So we’ll see how that goes. I head back there on July 15^th for my next appointment. Even the receptionist commented on how well everything is going and they don’t get to see me again for 6 months.

As for the family, we had a tremendous holiday. My wife's parents were up from NC for Christmas and we spent a lot of fun time with them and her brother’s and sister’s families. From December 29^th through January 3^rd, we were up at Mount Snow in Vermont. My wife, my girls and I and our good friends had a blast skiing for 4 days. The temps were pretty normal (teens or twenties) except for New Years Day when it was -32 degrees Fahrenheit at the summit!!! It was the coldest I think I was ever outside for. I only skied two runs before calling it quits that day. The other days we skied for a much longer time. Hopefully the Giants can win 3 more games to finish out the season. That will hopefully mean 2 more home games to sit through in the cold, but when they win, it always seems to be a bit warmer.

Stay well all and Go Giants!