My name is David Wilcher, and I am a lucky guy. But almost five years ago, a few unlucky things started to happen.
Early in 1998, I noticed my hands were swollen. I had a hard time gripping the handle of my coffee cup. I went to my doctor, and she prescribed some water pills. A few weeks later, my wife Toni and I traveled to Hawaii for our tenth wedding anniversary. We planned to do some hiking and backpacking. I was really looking forward to it. We recently had done a backpacking trip in Canyonlands National Park in Utah, and had a great time.
We drove our rental car to the trail head, somewhere on the big island. We parked, and I grabbed my hiking boots, but I could not get my feet into them. I came up with a theory about cabin pressure during a long flight, but the next few days shot that down. My joints started to ache, and I could not get comfortable lying in bed. We had a good vacation, but we did not get to do all the things we planned because I was not feeling up to it.
Back home, I went back to the doctor when my fingernails got infected. The doctor did a rheumatoid profile blood test. It came back, and it said my ANA was very high at 1:2560! I did not know what that meant, but it did not sound good. I was referred to a rheumatologist who told me he was pretty sure I had either Lupus or Mixed Connective Tissue Disease. I did not know how serious this was, but I felt relieved. Knowing the name of my enemy helped.
Another month or two went by, and my rheumatologist noticed the skin on my forearms was getting tight and shiny. He sent me to see a doctor at the University of Cincinnati. This doctor did some more extensive blood work, and found I had the Scl-70 antibody. She told me I had systemic scleroderma.
The name of the enemy had changed. By this time my hands had started to curl up. I remember the G.I. Joes I used to play with when I was a kid. They use to advertise that they had "kung-fu grip!" Their hands were molded into the shape where you could slip a pistol and they would grasp it. So I started telling everyone I had Kung Fu grip.
My joints were aching, and I got very stiff. I had a hard time getting up and down out of chairs, and I could not bend over to tie my shoes or even put my socks on. I had a hard time swallowing, and choked easily.
The doctor at the University of Cinncinnati gave me some options. None were proven to work. She told me that cyclophosphamide was very toxic. D-Penicillamine (Depen) was somewhat less toxic, and lastly, there was another treatment, something controversial called minocycline, an antibiotic that had some anecdotal success, but was not proven. But it was not toxic.
At this point, I did not have any internal organ involvement, other than my esophagus, so I opted for the minocycline. I continued to work during all this time. I was a quality manager at a heat treating company, which hardened metals by heating to high temperatures, and cooling. It was mostly a desk job, but I also ran a small lab. I had a difficult time reaching for supplies in overhead cabinets, and had to ask someone to get them for me. If I dropped a piece of paper on the floor it had to stay there until someone dropped by my office and I asked them for help.
A year went by, and I progressively got worse. I changed my rheumatologist. I did not like the first guy and after a few months, I told him that the minocycline was not working. I gave it a full year, but I decided it was time to try another approach. I started taking Depen early in 1999. I continued to feel worse. Some days I would get home from work and I would be too tired to eat. I would get chills and could not get warm. I lost my appetite, and lost about forty-five pounds.
I needed to lose a few pounds, but I do not recommend this method! In the meantime, I saw many specialists: a cardiologist, a pulmonary guy, doctors for my esophagus and one for the other end of my digestive tract. My lung doctor found I had only sixty percent of my lung capacity. I also saw an eye doctor and got glasses. Scleroderma was affecting my eyes too. At work, I noticed that when things got stressful my Raynaud's flared up and my fingers turned purple.
One day some important customers showed up and while I was showing them around, I started feeling very hot and started having chest pain. I finished the tour, and got someone else to show them out. After I sat down for a while, I felt okay, but I went to the doctor. I ended up having a heart catheter done a few days later, but no problems were found. I never did find out what caused the chest pain, but the severity lessened over the next few weeks. I am convinced the chest pains were stress related.
In January 2000, I decided to stop working, and applied for social security. My family doctor told me, "It's about time." I told my boss I would work two more weeks.
In February 2000, I went to the Cleveland Clinic on the advice of my family doctor. They did not have any new information for me, but suggested I double my dose of Depen. I started that night. Either getting away from the stress at work or the larger dose of Depen helped me. Maybe a combination of the two? Or perhaps it's the natural progression of the disease. I have read that after four or five years, things start to stabilize. Regardless of the reason, things have improved for me somewhat. My pain is less, and my range of motion has improved. I still get tired easily, but now I can rest when I want instead of pushing myself at work.
I said I am a lucky guy, and here's why; I have a wife who loves me and takes care of me without complaint. She works to support us when I no longer can. My family has been wonderful and supportive. They have helped me in many ways. I have a daughter who has become a wonderful young adult. She's twenty-one years old, and is fighting her own health battle. She's just finished radiation treatment for Hodgkin's disease. She's going to beat it.
I have found not only can I live with this disease, I can be happy. I have had to adjust my lifestyle, but it's a life I can enjoy. There is so much great music, good books, wonderful movies, and interesting people to talk to.
There are so many things to laugh about. I am a lucky guy.
Email: [email protected]
Story edited 10-20-02
Story posted 10-24-02
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Mixed Connective Tissue Disease
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