January 2016 update

I have a bit of catching up to do as I have 2 visits to report on and I realized that I never hit "Publish" to push the March 2015 update to the web site. It's the post just below this one if you scroll down.

After my visit last September I didn’t follow up with an update and I had another visit in January I’m just getting around to reporting on. Beginning last June (2015) I started to feel some pain in my elbow but pain always comes and goes but after a couple of weeks, the pain in one elbow started turned to some serious tightening in my arms. It was very tight when I fully straightened my arms and when I did I had little movement in my wrists from how tight things were. It continued to get tight until about the time I had my visit to Johns Hopkins in September but doesn’t seem to have changed much since then. Everything else with me seems about the same as it has been for a while.

We had a very mild winter with the air conditioning blowing on Christmas Eve. Just one large snow storm so far with mostly seasonable or mild temps. My body appreciates the mild weather so no complaints here. 

At my visit last month to Johns Hopkins, it looks like things have stabilized. During the exam, though there’s still some redness in the tight areas from the flare up starting last June, Dr Wigley feels things aren't getting any worse. They took blood like they normally do and I volunteered for an international research project where they took a skin biopsy to compare patients with scleroderma as well as patients without the disease. 

In November I had a lung test (PFT) and a heart test (echo cardiogram). The heart test was normal but I knew the lung test wasn’t as good as it has been. I didn’t feel well for a couple weeks before and after the test and it showed in the results. I knew it while I was taking the test and told my wife that I’m sure the results weren’t Very good. I feel fine now and the Dr wants me to have another test to confirm things are more normal. 

I have another check-up in Baltimore towards the end of April. We’ll check on a new lung test and hopefully see that the disease has quieted down again and I can go back to dealing with the typical aches and pains of someone over 50.  I’ll try and not skip an update again and sorry for not following up sooner.

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.

September 2014 Update

Earlier in the week I had a 6 month checkup at Johns Hopkins. 6 hours of driving for 1 hour spent with the doctor that saved my life. Everything has been stable with me for the past year and as Dr Wigley said when he left the exam "You are healthy - let me go find a patient that's sick and needs me". Well, as good as sounds, I am still "sick" and need to remain on a low dose of the medication that suppresses my immune system, but in general I am doing very well.

Dr Wigley checked everything out and it doesn't look like I've had any flair ups since he saw me 6 months ago and all vital signs and breathing seem fine. I need to get some updated tests on my lungs and heart to confirm things inside are as good as they appear from the outside, but otherwise, just keep going with the meds I'm already on.

We chatted a bit about my wife and my daughters, how they were doing in college, etc. I first got an appointment with Dr Wigley in January 2007 so it's been 7.5 years that I've been heading to Johns Hopkins. When he first met my girls on various visits, they would have been in middle school. His daughters have graduated and have good jobs now and he always asks me about the family.

I gave 6 files of blood for testing and made my next appointment for 6 months from now before heading out for the ride back north.

Tomorrow is 9/11 and there are some pretty whacky people doing some pretty crazy things out there. Stay safe and enjoy the fall colors & temperatures that are coming our way.

Stay well !!

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.

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!

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!!

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!