Wednesday, July 21, 2010

Summer 2010 Scleroderma Update

Is it hot enough for everyone? I know in the northeast it has been plenty hot, but it can't really be too hot for me since I got sick so I'm loving it. I do understand though how endless 90 degree days can get tiring for some. Today was my 6 month checkup down at the Johns Hopkins Scleroderma Center in Baltimore. It is my first checkup since going off Cellcept, the immune system suppression drug I was on for 3 years (Jan 2007 thu Jan 2010).

My older daughter decided to head down with me so I woke her up at 5:45am. She doesn't need much time to get ready and we left at 6am and got a couple of bagels and coffee for the ride down. There wasn't any traffic at all and we got there 1 hour early so we drove around a bit. After checking in they had me pop on the scale and check my blood & temp and all is normal. After a short wait, Dr Wigley came in, smiling and happy as usual. We quickly reviewed my dwindling list of medications and discussed how I've been feeling over the past 6 months since getting off cellcept. Nothing has changed - which is absolutely perfect! Actually, I did have one change and that is I needed to get glasses for the first time in my life. No one seems to think that needing glasses has anything to do with Scleroderma and its just from getting old(er).

Dr Wigley checked out the skin on my arms and legs and said it's completely normal and there's no indication I ever had scleroderma. Not so, at least yet, with my hands but it isn't bad and isn't getting any worse. We then talked about what comes next now that it seems the initial active part of the disease is over with. There are 3 main areas of concern and they are the lungs, the heart and the digestive system. Now those 3 wouldn't be my top picks for things I'd like to have to worry about. I'd be a bit happier if they were more like your appendix, body hair or tonsils but no one offered me a choice. Based on my lung tests, Dr Wigley said it doesn't appear that there was any damage (scarring) to my lungs caused by the disease so it's likely not something that would now occur. For my heart, he said I should get an annual echocardiogram to make sure there continues to be no damage to my heart. Last is the digestive system where other then some minor damage to my esophagus very early on, everything else has been fine. Just things to stay on top of but nothing to worry about.

I then asked him, jokingly, if I'm done having to drive 6+ hours for a 1 hour visit. He said he'd miss not seeing me every 6 months so I should keep coming back. We then said goodbye to the fabulous Dr Wigley and waited for a phlebotomist (fancy name for a lab tech) to come draw 4 large vials of blood for research. At the reception area I made an appointment for mid January for my next checkup and we were done. My daughter then asked if we could go get crab cakes at G&M. They make the world's best crab cakes with huge chunks of crab just barely held together with a minimum of breading. So we drove 15 mins to get some for lunch and bring home for dinner. if you are ever in Baltimore. You can take out or sit down in their regular restaurant. Once you eat these, every other crab cake will be 2nd at best. We then drove home with just a little traffic here or there.

That's all I have for now. Enjoy the rest of your summer, be safe and stay healthy!


epasen said...

Oh my that sounds just terrific! I'm so happy for you. All the best!
Emmi from Living with Sclero

Barbara said...

Glad to hear thyat you have recovered from this terrible disease. I was recently diagnosed and live in South Jersey. Would you be kind enough to refer me to the RHEMY doctor/s that helped you get to John Hopkins. I am determined to beat this thing and any/all help would be greatly appreciated. My e-mail is

Krissy said...

I see Dr. Ami Shah at the Johns Hopkins Scleroderma Center. I love her b/c she is very thorough but not an alarmist. I have so much going on, and she helps me prioritize it all. I'm a nurse (I just retired my stethescope thanks to scleroderma a few days ago, after trying to keep up for the last 2yrs), but you know how us nurses make the worst patients. I don't know how I managed without that center for 9yrs. So happy things have stabilized a bit for you. The vascular issues are really bad for me, so like you I am enjoying the heat- NOT THE HUMIDITY!

simone said...

Hi there. For a while now. I've been tuning into open blogs/diaries by people with chronic illness... Scleroderma and Myositis, in particular. It's a quiet connection I've learned to appreciate. Because it can all be so challenging...

Just want to say hello. And thanks for putting your words - and yourself - out there!

Anonymous said...

I am Nancy, I have SD, too I live in Southern NH

Lisa said...

Thanks for your blog. I found a link to it from my dad's blog. He also has scleroderma and has just had a finger amputated today from complications. He has major GI involvement and also had a pic line inserted so he can take a tpn feed (feed into bloodstream, bypassing the gut). the gi doctor is hopeful it will cause him to gain about 20lb in 2 months!
If you are so inclined, I'm sure he'd appreciate some positive words from a fellow scleroderma patient.
good luck to you in your journey. I will continue to read your blog and hope for all the best.