Wednesday, January 25, 2012

2012 Scleroderma Winter Update

Happy New Year to everyone! It has been about 6 months since my last update to you and I've just returned from a checkup at Johns Hopkins in Baltimore. It was an easy ride this morning down to Baltimore for a 10am visit. My first visit to John Hopkins was in Jan 2007 so it has been 5 years since I've been under Dr Wigley's magnificent care.

I met with Dr Wigley and we reviewed some tests I had done in November. One test is an echo cardiogram which is essentially a sonogram of the heart. The test shows everything is normal. The other test was a Pulmonary Function Test (PFT) that primarily measures lung capacity and the results were the same or slightly better than the previous test, so inside things are looking good.

I described to Dr Wigley how I've been feeling, which hasn't been great since about mid November. Nothing terrible, but just not as good as I have been feeling. I don't react a lot to how I feel on any specific day because I feel different every day, and even multiple times within each day. A single odd feeling day or two isn't much to me and never worth mentioning. As one example, this past weekend, my left arm felt like I had sunburn and someone was rubbing it very hard, and the skin on the upper half of my torso was very tight. Then on Monday, those feelings were completely gone. So with my description of how I've been feeling, Dr Wigley examined me and concluded that there's been a slight change from my past visits. We discussed the options and we both felt that going back on Cellcept made the most sense. Cellcept is the medication I was taking from Jan 2007 through Jan 2010 to suppress my immune system from turning on me. I had stopped the Cellcept medication in Jan 2010, which is 2 years ago this month. It is like playing whack-a-mole with my immune system and we just need to beat it into submission again.

After the exam they took 8 vials of blood from me for evaluation and research. As I got in my car, I noticed a man walking toward me from across the parking lot with newspapers under his arm and it was Ted Koppel. I didn't stop him but I waited until he got in his car and he was driving a BMW SUV with NY plates. Not sure if he was at JH for himself or visiting someone he knows. My next visit to Johns Hopkins will be in 3 months at the end of April and we'll see how things are then.

I'm a Giant fan and season ticket holder, so hopefully in 1 1/2 weeks, we'll be able to celebrate another Super Bowl win! If they don't beat the Patriots, they still went farther this year than I had expected. It's been an exciting few weeks to be a Giant's fan with 1 more game to go. Let's go Big Blue!!

I'll get back to you all in a couple months with an update on how things are progressing. Hopefully we won't have too much snow shoveling to do between now and then!

Stay healthy!


Anonymous said...

Thank you so much for your update. I just wish that you would write to us more frequently. Although I know that every case is different, blogs like yours are such a wonderful road map. I e-mailed you when I was first diagnosed, and you were very gracious to reassure me. As a result, I fly to JH from Georgia.

Ilana said...

Sorry to hear there was a setback and you had to go back on Cellcept. Because of your blog, I went on it. I tolerate it well, but am not having the same success. I also emailed you a while back and you were so quick to answer and so gracious with all of your answers. I hope it's just a short setback. Keep us posted.

Kyle Ann said...

Thank you for the update. I have been reading your blog since I was diagnosed last year. I am also on Cellcept and seem to be having good results. Your blog helped give me hope in the early months of my journey. The Giants won so I am sure you had a great weekend. I though am from Eagle country so needless to say the men in my household wish it where their team. Best of luck with the Cellcept again.

Pinky said...

I just found out that i have Scleroderma on January 30th 2012. I cant tell you how scared that iam. Everyday is something different, i never know how i will feel. My Toes hurt really bad and my Doctor is treating me with, Prednesone, Methotrexate. I dont know what to do, he wants me to take Orencia treatments but my gut tells me not too. I feel lost and paralized with fear. I just need to reach out to someone. Thank you!