All of this started around Thanksgiving of 2000, that was when my breathing problems got bad enough for me to want to see a doctor. I would wake up in the morning and sit up, and immediately be out of breath. Also when I did any kind of physical activity, I got out of breath real easily. I went to a pulmonologist (lung doctor) and he seemed to think that I might have a case of pnumonia. He changed his diagnosis to a mild case of ashma when I didn't have any other symptoms of pnumonia. He also detected some scarring of my lungs, called pulmonary fibrosis, which added to my problems. Well, around Christmas of 2000, I got my yearly dose of the flu. After I got over that, my breathing problems seemed to clear up, but by this point my joints had started aching.

So now I'm also seeing a rheumatologist (joint doctor), who thinks that I might have rheumatoid arthritis. I started seeing him just after the Superbowl 2001. Rheumatoid arthritis is a pretty scary disease. It causes massive swelling of the joints, and usually causes deformities, especially in the hands. The worst part about it is that there is no cure for it, just ongoing treatment that is not always very successful. In the meantime, my pulmonologist had found a bacteria of the tuberculosis family growing in my lungs. He said that it wasn't TB, but in the same family.

All this of course took months to figure out what was going on. By the end of April, my rheumatologist had me on Vioxx for my arthritis symptoms. Now, my feet had started to swell up some, so he put me on 5 mg of prednisone to help with the swelling. Well, within a week of going on the prednisone, all my arthritis symptoms went away, although my feet continued to swell. Due to the swelling, and before that, the arthritis symptoms, I had not been getting alot of sleep, like 1 or 2 hours a night. This had been going on for about a month, with the arthritis pain, and for about a week with the foot pain, before I went to my doctor about it. On May 15, 2001 I went to my regular doctor about my feet, and for a general checkup. He saw something that he definately did not like, because after a 2 hour appointment, he told us to head down to Carolina's Medical Center, that they were waiting to check me in.

Well, I spent a total of 10 days in the hospital, and from almost the first day I started to look better, mainly we think because I was on prescription sleep medicine, and actually getting some sleep at night. During the arthritis time, I did not have any appetite, and lost about 50 pounds. While I was in the hospital, my appetite came back with a vengance. It took me about 5 days of being in the hospital before I finally felt full after a meal, and that was the day the food service messed up and brought me 2 breakfasts, then lunch, then my mom showed up with some food, then my sister-in-law showed up with more food. I was finally full again.

While I was in the hospital, I of course had all sorts of tests run on me to try to figure out what was wrong. It turns out that I have vasculitis, which is a swelling or inflamation of the blood vessels. The doctors think I have what is called Poly Arterosis Nodosa Vasculitis, or PAN for short. Since this is such a rare disease (lucky me), they aren't 100% sure, but the treatments seem to be working. While I was in the hospital I got put on a much higher dose of prednisone, plus all sorts of anti-biotics, plus a prescription sleep-aid, plus the good, pink pain pills.

Anyway, for whatever reason the vasculitis had decided to attack my feet, and cause all this swelling. It also caused the nerves in my feet and lower legs to start dying, as well as some of the flesh of my right foot. Due to the nerve damage, I don't have alot of sensation in either foot (right now this is a good thing IMO, as you'll see in the pictures), and I have whats called toe-drop. Basically I can't raise my toes. If my foot is flat on the floor, I can't lift my toes, something you take for granted, and is essential if you want to walk correctly. I'm doing physical therapy, and at least my left foot is getting better. My right foot is another story altogether. Like I said earlier, the vasculitis caused actual physical damage to my right foot. I have 2 areas of dead flesh on my foot, one on my instep, and another opposite it on the outside of my foot. The outside area also spread to include the last 2 toes on that foot. The tip of my big toe is also dead, and smaller areas of skin are dead on the other 2 toes as well. My orthopedic surgeon (toe doctor) says that he will have to amputate at least the last 2 toes on my right foot, and probably some of my big toe as well.

The last time I went to see the orthopedic surgeon, he trimmed off some of the dead flesh. Now that is a freaky thing, sitting there in the examination room, with the doctor taking a scalpel and just cutting away flesh off of your foot. Thankfully, due to the nerve damage, I didn't feel anything, but its just creepy watching it happen, and gross too. I went back to the orthopedic surgeon on July 27th, and he put me in the hospital for surgery on July 28th. The surgery took about an hour, and I had the big toe on my right foot amputated, as well as the last two toes, and the long bones of the foot for the last 2 toes.

Right now, I can't put any weight on my right foot, so I have to get around by using a walker and hopping all over the place. What I do is sit around on the couch all day on the computer or watching TV. I do have a wound care nurse come in twice a day to change the dressing, and friends do stop by, but if it wasn't for my computer and Internet access, I'd go bonkers. Hopefully, the wounds in my foot will heal soon, and I'll be able to start walking again.

I went to the orthopedic surgeon on August 14th, and he says that my foot is healing up great. He said that now I can put weight it, and he gave me this special boot to wear so I can walk around. It looks kinda like a ski boot, and it sounds like I'm walking in a ski boot when I move around. Being able to fairly easily get up and get something to drink, or get a book feels great. My wound care nurse says that she thinks my foot will be healed enough to have skin cover the whole thing again in a couple of weeks. I can't wait.

After my foot does get healed up, I will be able to be fitted for a shoe insert, that will take the place of what is missing off of my right foot. The surgeon says that this will help with balance. Anyway, things are looking very "Up" right now, and I'll be back to as normal as I get soon :)

Woo, got the stitches removed today, 8-28-01. With a couple of the sutures, the skin had grown over the knot, and it had to be tugged out before the stitch could be removed. Another good thing for having some numbness in my feet. It won't be long now before my foot is completely healed up. I can't wait!

Oh, one more treatment that I am going under...to help reduce the effects of the vasculitis, I am taking a chemotherapy agent called cytoxin, in much smaller dosages than cancer patients get. I go in once every 3 weeks or so for a 3 hour IV treatment. Anyway, here's what you came to see. Click here to see gross pictures of my foot, before the surgery, and click here to see pics of the foot after surgery.

Update 3 Feburary, 2006
The cytoxin apparently helped. I haven't had any recurrance of the vasculitis, however I do take a low dose of another, much less powerful, chemotherapy agent called Immuran. I only take 100mg of it per day in tablet form. It has been 4 1/2 years, and things are looking pretty good for a full recovery and remission. I still don't have full feeling in either of my feet, but I am able to walk, rollerblade, drive, etc without too much problem. I will eventually get some pictures of what my foot looks like now up on the web, they will be coming soon.