Wednesday, April 1, 2015

March 2015 Update

I just realized this post from March 2015 was never published and was just sitting there waiting to show up on the web site....

Happy spring, though the weather has been more like winter! The end of March I had my semi-annual check up at Johns Hopkins Scleroderma Center in Baltimore. It was delayed about a month due to a severe snowstorm early in March that would have prevented me from getting there. I was rescheduled for an early afternoon appointment so I wasn't up before the chickens and worked from home in the morning before heading down there.

When I arrived, they had just redone the reception area and front office. The facility is so much more active now in comparison to when I first started. After checking in, they took my blood pressure, temperature and weight, all of which remains normal. Dr Wigley came in and we went over through the medications I'm on. Over the course of a couple weeks in December I had weened myself off a medication called Protonix. Protonix is used to control acid reflux and though there were a couple days where it acted up, Tums quickly got things under control. Less medication is better and since I wasn't experiencing much indigestion I figured I'd see what happened. That leaves me just on 3 meds - Ibuprofen, Nifedipine for Reynauds (some take this med for high blood pressure) and a low dosage of CellCept/Mycophenolic to suppress my immune system (originally developed for transplant patients so they didn't reject the transplanted organ).

Dr Wigley gave me the once over and he feels my skin is "normal" with the exception of a couple fingers where it's still really tight, but that's no different from how it has been. We chatted about a few things and he gave me prescriptions to get a Pulmonary Function Test to check out my lungs and an Echocardiogram to check out my heart and make sure everything is what it should be. He also gave me a referral to have do physical therapy to keep things moving as they should, and gave me a rubber egg to use for squeezing to help with mobility in my hands.

After the exam I had 6 vials of blood taken, some for checking my blood and some for research. On the wall they have various studies that take place but the ones I saw required on-site visits to Johns Hopkins and that's just not feasible. I've done some studies where I can participate while I'm there for my regular visit or do it remotely but I didn't see any new ones like that. I then made my appointment for next September and headed home, pleasantly surprised I didn't run into any traffic even though I was heading back during a good portion of rush hour.

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