One year from my first Scleroderma Center visit

Today is exactly one year from my first multi-hour visit with Dr Wigley at the Scleroderma Center at Johns Hopkins in Baltimore. What a long year it has been.

The week before my first visit, as I do with my family every year, we went on our annual ski trip. I could barely get my ski boots on and after 1 run down the mountain, I had to admit defeat and give in to the pain. Though my family enjoyed the week of skiing, I wasn't able to ski. Exactly one year later, I skied for 4 complete days without any discomfort including a day skiing with 12 inches of fresh snow.

I consider the accomplishments over the past year a minor miracle and thank Dr Wigley and his team at the Scleroderma Center for getting this disease under control. My hope is no further progression and continued improvement.

Happy New Year all!

My latest Scleroderma Center visit

Our latest visit to the Scleroderma Center at Johns Hopkins in Baltimore was today (Dec 5th, 2007). We set out before the sun was up and arrived in Baltimore early. They checked me in, took all my vitals and in in a couple of minutes Dr Wigley came in. For those that saw my last post, you know that Dr Wigley was on the Today Show a month ago with Bob Saget discussing scleroderma. When he came in, I told him that I had told all my family and friends that I had a hot looking 25 yr old doctor, and now the jig was up. He filled us in on his morning getting ready and being on the Today Show.

In October, a month after my previous visit and the primary medication was reduced, I started to have issues with my hips. The same problem I had with my legs and forearms was happening with my hips. It was so uncomfortable I couldn't sleep through the night. Dr Wigley had me go back to the full dosage on the primary medication. After a few weeks, the pain subsided and hasn't bothered me much since. At today's checkup he indicated it might not have been specific to the reduction in medication. He's done this longer then I have, so who am I to argue? We reviewed my last lung test and it came back normal and slightly better then the previous one. All my blood tests came back fine. He checked everything out and said I am doing great and it's the best he's seen me yet and that we will look to reduce the medication a bit again and see how it goes.

When he was done, there was some vials of blood taken for more research and another walking test for research. They also have a new research test which I signed up for. Dr Wigley was reading an article about someone at Johns Hopkins working on miniaturization related to the Hubble Space Telescope and they together have developed some prototypes of a small computer monitoring device which will measure outdoor temp as well as the skin temperature of 1 of my fingers. Most folks with the type of scleroderma I have also have a condition called Raynauds which causes your fingers (and toes) to turn purple or white from the cold. This monitoring will capture information they haven't previously had available. So what the heck, I'll wear it for 3 days, send them the device back and it will have all the data for the 3 days for them to download and analyze. They definitely do some neat work at research centers you couldn't get by going to a local doctor.

When we left, it was a mini snow storm that lasted most of the ride home. The most important thing during the day were the girls got their hair cut and they are each happy with how it came out. Driving 6.5 hours for a checkup is nothing compared to dealing with 2 teenagers with unhappy haircuts. A good end to a good day.

It's been 11 months since I've been seeing Dr Wigley and on the medication and things have definitely improved. Last year at this time it was getting pretty rough. I couldn't hardly get ski boots on my feet let alone a few runs down the slope. I'm hopeful this years ski trip to Mount Snow between Xmas and New Years will prove a bit more enjoyable. Skiing with my wife, the girls and friends we always go away with is way too much fun to miss out on 2 years in a row. I wish each of you happy holidays and a happy and healthy new year. If nothing exciting happens, I'll check back in the beginning of March after my next visit.

Dr Wigley & Bob Saget on NBC's Today Show

I'm sending out an email in between checkups because Dr Wigley who I go to at Johns Hopkins was on the Today Show on Tuesday 11/6 with the comedian Bob Saget who is an advocate for scleroderma. Bob's sister had the disease.

The video clip of the segment is on the Today Show web site at the
Today Show Video. The video is about 6.5 minutes long. Hopefully the video stays up at least long enough for you to check it out if you want to.

I head back to Baltimore the beginning of December so I'll send out an update shortly after. I hope everyone has a great Thanksgiving!!

A bit of a set back

Starting last Weds (10/17), I felt some fibrosis in my left arm. On Sunday, my hips started hurting. The fibrosis in my left arm is much better, but my hips are still "rubbing" a lot. When I walk, if I put my hands on my hips, I can feel the rubbing. I can feel it without doing that but I could show my wife what was going on.

I emailed Dr Wigley at the Scleroderma Center at Johns Hopkins and he recommended I go back to 3 cellcept pills twice a day. It was knocked down to 2 pills twice a day after my last visit. He asked that I contact him again in 3 weeks.

Hopefully before Thanksgiving the fibrosis will be back in check.

End of summer scleroderma checkup

Wednesday my wife and I woke up early and set off for another visit to Johns Hopkins Scleroderma Center to see Dr Wigley. On the way down, we heard on the radio that it was International Talk Like A Pirate Day - http://news.yahoo.com/s/nm/20070918/od_nm/pirates1_dc . Maybe everyone should put this important day on their calendars for next year.

Every time we go in the exam room, Dr Wigley has a different 'student' who is a real doctor, working with him, that meets with the patient first. The student comes in and does the pre exam, asking general questions about me and doing an exam. One part of the exam, which I've previously mentioned, is where they score my skin on a scale of 0 to 3 with 0 meaning normal and 3 meaning severe damage. They check my fingers, hands, arm, legs, face, chest, etc. Well, I know my score (as does my wife) since they do it every time. After they are done, the 'student' comes back in with Dr Wigley and he always asks the student Dr to explain their scoring. Well this time, the other Dr didn't do so well but it is always the part that is most subjective and where Dr Wigley usually disagrees with the student. Next time we might feel bad for the 'student' and give them some hints to help them out. Or maybe we'll make cards like they used to hold up in diving competitions and after the 'student' rates me, we'll hold up the cards with the right number. If you really wanted to know, my right hand is a 2, my left hand is a 1, my forearms are 1's, my upper arms 0, my face is a 1, my chest a 2, my abdomen a 0, etc.

The overall visit went well. Dr Wigley is pleased that nothing appears to have gotten worse and he feels there might even be slight improvements. We need my latest lung test to get sent to him so he can compare the results to the previous tests and make sure nothing is going on inside. But otherwise, though I'm not better by any stretch of the imagination, it is pretty good news.

The major medication I'm on is CellCept which interacts with the immune system. I was taking 6 pills a day for 6 months. Dr Wigley reduced it to 4 pills a day. That means I still pay $75 for a 3 month supply which goes for $2700 but insurance gets a break and that medication only costs them $1800 now for 3 months. Thanks to Roche Pharmaceuticals for the medication!

We spoke with both the student doctor and Dr Wigley about my overall abilities. If we use a scale of 1 to 10 with one being poor and 10 being great, they indicated many patients are at the low end of the scale while I am toward the upper end. And though I used to be a 10 (hiking 20+ miles over a weekend) and now I'm more like a 7, compared to the average patient, I am much better off. Many days, at least until it gets too cold, I walk about a mile each way to/from work.

My wife and I think Dr Wigley enjoys meeting with us. First off, we're relatively young compared to other patients. I'm in comparatively excellent shape (for a guy with an incurable immune disease) compared to others he needs to deal with so it's (knock on wood) not a depressing discussion. We always crack jokes with him (would you expect anything less) and the student doctor so it's a pretty relaxed exam.

At the end of the exam, Dr Wigley indicated that he feels based on how I have so far reacted to treatment, that things should, over the long haul, start to show signs of improvement. Last month on vacation I actually played a round of golf after 2 years. I went with my brother in law, one of my nephews and my older daughter. Using my other nephews clubs I was a bit rusty on the front nine but on the back nine I started off with a birdie with a par or two and ended with a 45 on the back. My hands were pretty sore at the end but the clubs never flew out of my hands. Hopefully next summer things will continue to improve and I can get out a couple more times. I'm also hoping I can ski this year since last year it just wasn't possible.

We'll be heading back to Baltimore for my next follow-up the beginning of December so if nothing exciting happens between now and then, have a fun Halloween, a Happy Thanksgiving and I'll check back in December.

Mid-Summer checkup at the Scleroderma Center

Yesterday was my mid-summer checkup at the Scleroderma Center in Baltimore. My wife and I woke up early (4:30am) and drove down for the 9:50am appointment.

The checkup went very well. Dr Wigley is pleased with how things are progressing. No additional damage from the disease seems to have occurred and things appear stable since my last appointment and even very minor improvement in some areas. All positive news!

What bothers me throughout a typical day are usually my hands, hips and knees. He said the disease has caused the equivalent of arthritis in those joints. He's rather optimistic that I should start to see some improvement. Who knows, maybe I'll get to grip a golf club again some day. I wonder if he can cure my fade too and turn it into a nice draw? It's still hard for me to be overly optimistic that I'll get much better. I guess if I don't get any worse, I can live with that and any improvement is icing on the cake.

I head back to Baltimore towards the end of Sept for another checkup. He indicated that if things continue as they have, he will likely drop the dosage on the CellCept medication I'm taking. In my initial meeting with Dr Wigley, he indicated there's typically a 2 year period where the disease is most active. If I estimate about when I first started to notice something different going on with my body, it's been about 18 or 19 months. Hopefully the medication has caused it to plateau early. Monthly blood tests and another lung test and I should be good to go until my next visit.

If I look at what has occurred in the last few days with my dad having what appears to be successful back surgery, my brother in law being told his lymphoma is now in remission, and a positive report from my doctor, I guess this was a banner week! It's nice to know the things that come in 3's came with some good news for a change.

Summer is two thirds over already. Both girls visited my parents in FL for a week of being spoiled so my wife and I set off for Mystic, CT for a nice getaway weekend. We're all heading to North Carolina in mid August and then the kids are almost back to school. I hope you all enjoy the rest of your summer. Stay safe and well.

Almost time for another visit

Almost time for another visit to see Dr Wigley at the Scleroderma Center in Baltimore. Time for a 2 month check up. I actually look forward to these visits. Maybe it's the hope that when I get there, he tells me he found the magical cure.

I just read a short article that is probably one of the best written articles on Scleroderma that I've read. It's from a local news station and it's available on their site at - http://www.14wfie.com/Global/story.asp?S=6851548&nav=3w6r. I suggest you check it out.