Sunday, September 22, 2013

Scleroderma Day 2013

My wife and I were able to attend Scleroderma Day hosted at Johns Hopkins. It started out with Dr Wigley introducing himself - "My name is Dr Frederick Wigley and I was put on this earth to cure scleroderma."

The first part of the event were presentations regarding the Johns Hopkins Scleroderma Center including a brief chronology which includes a couple of doctors in 1980 and 1 nurse handling everything, including answering the phone. Today there are many doctors, nurses and other staff handling what was reported as 6 new patient request calls coming in each day. The center now takes on about 200 new patients each year.

One of the presentations focused on what happens after the patients who donate blood leave the office and all the work that occurs by the research team associated with the center. The team tries to evaluate the blood as soon as possible where it best represents its state within the body. They showed some of the expensive machines used to analyze blood.

The second part of the event was a Q&A session with Dr Wigley and 8 other doctors from Johns Hopkins that specialize in rheumatology, pulmonology, dermatology, psychiatry. What became evident is the extensive collaboration that occurs across treatment of patients and ongoing research throughout the Johns Hopkins medical community. Each of the doctors on the panel referenced research in their specific areas related to scleroderma such as analysis of pulmonary hypertension medications and the differences in effectiveness on scleroderma patients.

The event went quick but it was worthwhile and great to hear about everything that is going on as well as how some things work behind that scenes that we as patients wouldn't normally see. Thank you Dr Wigley and the rest of the Scleroderma Center doctors & staff as well as the other JH doctors that are all working toward finding a cure for scleroderma. I hope my wife and I can attend next years event and if you have the opportunity, and don't need to travel too far, maybe you can make it too.

Sunday, September 8, 2013

2013 Summer Update

The unofficial end of summer has come and gone and so has another checkup for me at the Johns Hopkins Scleroderma Center in Baltimore. I had my last checkup in February and it was time for another quick trip down to see Dr Wigley. I have to say that I don't recall there being less traffic on any other trip. Maybe it's because it was the day after Labor Day, but there was never a slow down heading there or heading back.

When I first went to Johns Hopkins in January 2007, after being diagnosed in the late spring of 2006, there were just 2 doctors in the practice and it was relatively quiet there . Now there are 5 doctors specializing in scleroderma and it's much busier, though they do a great job of getting things done efficiently and on time. I've been back on CellCept since Jan 2012 when my immune system seemed to be fighting me again instead of helping me. After my last visit in February the dosage was reduced from 3 pills twice a day to 2 pills twice a day and now we'll slowly reduce it over the next 3 months to 1 pill twice a day. So that means the medication continues to work and keep things in check like it's supposed to do. 

As Dr Wigley says with a smile, if I didn't have scleroderma I'd be in fantastic health! He's very pleased with my progress and we'll catch up again next March. Actually I'll see him and the other doctors later this month as they are hosting a Scleroderma Day at their facility and my wife & I will be driving down and attending. The Doctors will be speaking about the latest research and current advancements in treatments and we'll get to hear it all from them. 

After my appointment I gave 7 vials of blood for tests and research, made my next appointment for March and headed back on the road for an easy 3 hour drive home. 

I will follow up again with another post at the end of the month as long as we make it Scleroderma Day.

Stay healthy!

Thursday, February 7, 2013

2013 Winter Update

Happy 2013 everyone! It's been a few months since I last sent out an update and I notice that this update is the big 2-0. Also in 2013 I hit the big 5-0 so that's another milestone coming up this year.

I had a checkup this morning at the Johns Hopkins Scleroderma Center in Baltimore, MD. When I arrived, the waiting room was packed but they quickly took my vitals and got me into a room. In 2 minutes Dr Wigley came in sporting a big smile as he usually does and sat down for a chat. We discussed the last few months since I was there in August and how I was feeling. We went through the list & dosage of medications, how my breathing was etc. I then got on the exam table and he checked out my skin which he was happy to see was flexible in all but a few places. He listened to my lungs and heart and checked out my range of movement and if I had any pain which I didn't.

I've been back on cellcept, the drug which is suppressing my immune system from going a bit bonkers, for 13 months (Jan 2012) and it seems to have again done its job of making the scleroderma calm down and not cause any further problems and damage. I'm currently taking 6 pills a day and I will start to take 5 pills daily for the next 6 weeks. After 6 weeks I will cut out a second pill and reduce the medication to 4 pills a day until I head back to see him in 6 months.

I gave half a dozen vials of blood, some of which will be used for research, then made my next appointment and hit the road back home. Walking out with some tasty Maryland crab cakes would have been great but I'll take a lower dosage of the medication as a nice parting gift.

Well that wraps up another update. If anything exciting happens before my next scheduled update I will send along a quick note. Hopefully spring and warmer weather will be just around the corner and old man winter will go easy on us. Until then, stay happy and stay well!!

Saturday, December 22, 2012

2012 Holiday Update

I had a couple of requests for a quick update on how things are going. My next visit to Dr Wigley at the Johns Hopkins Scleroderma Center is in February so the lack of updates are just do mostly to not having anything significant worth posting about.

I've had no change for the better or worse since my last visit over the summer. I think those with scleroderma would usually consider no change being good news and that's how I think of it too. I'd love to see some improvement such as more range of motion in some joints but I can deal with what I have.

I'm down in NC at my wife's parents house with her brother and sister here or arriving today so we'll have 15 of us together for Christmas. Lots of noise and lots of chaos but there will be lots of fun and laughing. It's a great time of year to celebrate life and I wish everyone a great holiday and a happy and healthy 2013!

Thursday, August 2, 2012

2012 Summer Update

On Weds I had another quick trip down to Baltimore and a visit to the Johns Hopkins Scleroderma Center to see Dr Wigley. It was 3 months since my previous visit in May and 6 months since I went back on the medication to help suppress my immune system which seemed to have jumped into overdrive again. It is just around 6 years now that I found out I was initially diagnosed with Scleroderma.

Overall I feel better then I did 6 months ago which is good news. My weight was down a couple pounds but I think that was more being weighed in shorts vs jeans. Dr Wigley and I discussed how I was feeling and what changes I've noticed. Internally (heart, lungs, etc) everything appears fine. He then examined me and seemed to feel that overall my skin looked good but my hands and ankles seemed to indicate a slight decrease in elasticity/flexibility. Not all great news but not bad news either.

So we decided to stay on the maximum dosage for another 3 months and see how it goes. In 3 months I will check in with Dr Wigley and let him know how I feel and if anything has changed. If things seem to have improved, we might drop the dosage a bit. Otherwise, we will keep it as is and head back there in February for a 6 month checkup.

Dr Wigley mentioned they also have some new medication they are trying out so if the Cellcept immunosuppressant doesn't work, there is another option to consider. I didn't ask the specifics on the name or type of drug and hopefully it won't be necessary. I then gave 6 vials of blood for research purposes and was on my way.

On my way back home I hit a traffic jam a mile short of the Delaware Memorial Bridge. There were 2 lanes closed off for the entire span because a distraught guy got out of his car and was sitting on the edge with his feet dangling off. A newspaper article on Thursday indicated he was there for 7 hours before he decided not to jump. Can things really be that bad?

So that's a wrap for this update. If anything noteworthy happens over the next 6 months I will send something around. Otherwise, you should hear from me again in February. Be safe, enjoy the rest of the summer, and stay well!

Saturday, May 5, 2012

2012 Spring Update

It has been a busy 2 weeks with a trip to the Scleroderma Center at Johns Hopkins in Baltimore last week sandwiched between trips to Clemson University and Orlando, FL.

My wife drove down with me this trip getting up very early to make the ride . After the preliminary weigh in and blood pressure I was off to the exam room where Dr Wigley came in and we discussed the past couple of months since my January visit. In January I went back on cellcept, an immunosuppressant drug, and I started to feel better near the end of March, but felt crummy again the first couple weeks of April. The skin on my face has also been very red like it is sunburned and uncomfortable. He examined me checking my skin elasticity on various parts of my body, joint mobility and breathing. He felt there was some additional tightening of the skin on my arms but nothing very different elsewhere on my body.

After the exam he recommended increasing the cellcept dosage to the max of 3 pills twice a day to get the medication, which previously worked, at maximum strength so it will again shut down any further activity. He also prescribed a different medication to try and deal with the reddness on my face, and if that doesn't work I'm off to a dermatologist. That's all we can do right now and wait for the drug to kick in again and slap down my immune system.

My next appointment is the beginning of August, a couple weeks before we head to SC to drop my oldest daughter at Clemson to start her freshman year at college. Hopefully by my next visit I will be feeling much better. After driving back home from Baltimore we finished packing and headed off to the airport and an evening flight to Orlando.

That's a wrap for this update and I'll be back in touch the beginning of August. Enjoy the rest of the school year and the first half of the summer and stay well!

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!