Steve Hendricksmeyer

My name is Steve Hendricksmeyer. I was 34 when I was diagnosed with NF. On April 23, 2003, I went into the hospital for a routine colonoscopy to check for polyps in my colon. The procedure went okay and I was sent home. After I was sent home about 45 minutes to an hour I noticed I was bleeding from my rectum. The doctor had told me that if I bled more than a tablespoon full I should let him know. So I went back to the ER at the hospital and was checked out and they let the doctor know. So he checked me and decided to be on the safe side he should do another colonoscopy to make sure that he hadn't nicked anything while he was in there. The first colonoscopy was at 8 AM Wednesday April 23rd and the second one was at 7:30 PM. Also before I went in to have this colonoscopy I was in good health with nothing wrong. It was a routine colonoscopy because I had a small polyp found a couple years earlier during a colonoscopy. Anyway, after the second colonoscopy the doctor decided that the bleeding was from skin around my rectum that was irritated from the procedure. So to be on the safe side he put me in the hospital overnight on complete bed rest to make sure I wasn't going to bleed anymore. At about three in the morning I had to have a bowel movement so they brought me in a bed pan. But I noticed that it wasn't wrapped like the others I had saw. I used it and tried to go back to sleep. About 20 minutes after using the bedpan my groin and crotch and rear end began itching and burning like fire! I called the nurse and they gave me a sleeping pill and told me not to itch. The next morning (after a restless night) I noticed that I had a rash of big red welts all over my crotch and down the inside of my thighs. When the morning nurse came in I told her about using the bedpan and the itching and the rash that I got. Without looking at it she said that it probably wasn't anything to worry about and that they would give me some Benadryl and that I would be fine. So the doctor, without checking the rash, sent me home and said I would be fine. This was the 24th of April. I got home and wasn't feeling just right but I thought I'd be okay too. As the day went on I got sick, I was chilling and had a fever and the rash was getting worse. I showed my wife at lunchtime and she and my mom decided to take me back to the doctor. At 2:30 we were at the doctor's and he said I was septic and put me in the hospital immediately. They put IV's on me and kept me overnight again. The next morning the doctor came in early around 7 AM and told me that it wasn't getting any better so he was going to send me to the University of Iowa Hospital because he couldn't do anything more for me there. At 9 AM the ambulance left the Keokuk area hospital for the University of Iowa. After we got there I was seen two doctors, the last of which I credit for saving my life. His name was Dr. Kealy and he told me that I had NF. I had never heard of it and I thought it was a third world disease. He told me that they would have to operate very quickly and that they may have to remove my testicles and that I might have to have a colostomy bag. But Praise God, neither of those things came true! I had a three hour debridement surgery where they removed a pound and a half of skin and tissue form my crotch and the very top of my thighs. But they did not have to remove my testicles or give me a colostomy. They thought they might have to do more surgery that evening but they didn't have to. This surgery was on Friday, April 25, 2003. On Monday, April 28, 2003, I had to start what they called tub therapy where they have to clean the area where the skin and tissue was removed. It was very, very painful! I had that for a week! On Friday May 2, 2003, I had a three hour skin graft surgery where they took skin from my abdomen and grafted it to my crotch. It was much easier to walk now. I had to have more tub therapy. They put what looked like a plastic cover over my graft site that was supposed to stay there un till the skin healed. But I had a reaction to it and it peeled off the second day. So they had to use Vaseline gauze which had to be peeled off for tub therapy every day and the skin graft site had to be cleaned. This also was very, very painful. On Saturday May 10, 2003, I was sent home from the University of Iowa Hospital. I was still very, very weak! I stayed inside my house the first week I was home due to being very weak. On Wednesday May 14, 2003, I went for my first checkup in Iowa City with Dr. Kealy and it went very well. I got out the next week for a ride it was nice to go outside. On May 28th I went for my second check up with Dr. Kealy which again went well. On June 11th I had my third check up with Dr. Kealy. I was getting a lot more energy back at this time. I was able to go back to work on June 16th after being off for eight weeks. I went for my 4th appointment on Wednesday July 2nd and my final appointment on August 19th to see if I could still father children and they said I would be able to. On February 24th I had to go up to the University of Iowa Hospital with some symptoms of NF but no rash. The doctor in ER said that I had an abscess on my bottom which he had to open and I had one on both cheeks. I fought this infection for four months I was in the hospital five times through this ordeal and had three surgeries where they cut into my skin but it never went into NF but the doctors told me it came very close. I was finally dismissed this time on June 16, 2004 and to this day, August 27, 2004, I am doing fine. If you would like to contact me to talk about this or to exchange stories or if I can encourage you, please contact me at sl_ben@hotmail.com.