|Charles Rockwell's Survivor Story|
|My NF Survivor Story|
I’d like to start out by saying that I’m 51 years old and like to running and biking to keep in shape. Over the last summer, I've been running about 25 miles a week including a long run on Sunday mornings along the Charles River in Boston, Massachusetts. This was prior to my battle with NF. I have enjoyed excellent health all my life with a possible exception. I have fought to maintain a healthy weight. At my heaviest I weighed 270 pounds when I graduated from college in my 20’s. I now weigh 170 pounds and have attained and maintained this weight through exercise and nutrition.
I’m an engineer, pretty much at a desk on a computer for most of the work day. I remember sitting in work and getting up off my chair and I felt a stabbing pain in my upper thigh just below my left buttock. I didn’t think too much of it. When I latter checked it out in a mirror I thought it was just a saddle sore from bike riding but I hadn't done much riding lately. This was on Tuesday.
I continued my work week as usual including my Thursday morning 6 mile run along the Charles River. I felt fine. I noticed that the sore on my thigh was a little bigger and it flattened out and was dark in color at the center and now about 2 inches in diameter. It was painful to sit. The first clue that something was seriously wrong came on Friday afternoon. I was in a meeting and all of a sudden felt feverish and got a chill. I could not stop shaking and could not think straight, I felt confused. The fever and chills did not last long about 15 minutes. I left work that Friday afternoon at my usual time with a headache not realizing I would not be back to work for months.
My symptoms came in waves over the weekend with increasing severity and duration. They included fever, chills, body aches, nausea and the worst headache of my life. Touching top of my head was painful to the touch. Aspirin provided no relief. The one constant was the pain in my buttock. I stayed close to home over the weekend pretty much staying in bed, sleeping a lot and eating very little. I thought I had the flu. I called into work on Monday morning October 6th to let my boss know that I would not be coming to work today. I laid in my bed that Monday morning feeling the sickest I have ever felt in my entire life. The pain in my joints and muscles, especially below my waist, was excruciating. The headache and shaking would not stop. A voice inside told me to get off my bed and go to the hospital or you’re not going to make it. Fortunately a friend was available to give me a ride to Emergency Care at the Brigham and Woman’s Hospital at about 10:30 am.
I must have looked a mess, hunched over in pain and trembling, every thing was very confusing. I told them about the abscess on my buttock and that I thought I had the flu. I know that I did not spend long at the Emergency entrance before I was brought to an observation room. I remember being asked to undress and lay on the gurney; I told the orderly “I can’t because I was freezing cold”. He told me that’s not the way things are done and got me a blanket still hot from a dryer. The next thing I remember I had an IV in my arm and a voice told me that he was giving me an injection of Morphine. After a short time I asked when the Morphine would begin to work. I got a second injection and shortly, for the first time in 4 days, I did not have a headache.
I saw many doctors and residents over a short time. The focus was the abscess on my buttock. I was asked many questions, some over and over. Are you allergic to any medications? When was the last time you ate? Who in your family do we need to contact? Do you have any history of Diabetes in you family? Are you HIV positive? I was given about a gallon of something to drink and told I was going to have a CAT scan. The results of this test showed an internal accumulation of gas. I was told I had a serious infection and needed surgery to remove soft tissue over a large area of the abscess and that the removal could include my testicles. A doctor told me I was lucky because as best they could tell, the infection had not gone into my anis. I did not feel lucky. I think I was in a kind of shock; nothing seemed real, it was like a dream (or nightmare). The medical release papers were put in front of me. I asked what the consequences were to elect not to have the surgery and was told this was likely a fatal decision. I signed the release papers. I was wheeled to surgery about 3:00 pm. This would be the first debrievement.
I woke up in the IC. I think it was about 9:00 O’clock at night. I remember that the Red Sox playoff game with the Rays was on the TV. The nurse came over, seeing that I was awake. I did not have the courage to look for myself; I asked him if I still had testicles, he told me that I did. I felt lucky. I was later informed that no muscle was removed at that time, only an extremely large area skin and fat. I had a sponge-vac in place and was informed that additional debrievements were coming.
I was in the hospital for 12 days, had 3 additional debrievements and a procedure to close the wound. The additional debrievements resulted in minimal tissue loss. Fortunately a skin graft was not required. I was an excellent candidate for a flap procedure on my upper thigh because additional weight I had carried earlier in life that resulted in extra skin on my upper thighs.
No one at the hospital ever said the words “NECROTIZING FASCIITIS” to me. I think the doctors and nurses didn’t want to alarm me. I wouldn't have known what it was anyway. Instead it was referred to as “a very serious infection”. The first time I saw the words was when I read my discharge papers and looked it up on the WWW. I was not able to look at my wound until several days after being home. I have a scare starts just above my left knee up my inner thigh to the base of my scrotum and across my lower left buttock and down the back side of my thigh almost down to my knee. To add insult to injury I developed a blood clot in my left calf after being home for 3 days.
I did recover after several months that included a lot of help from family and friends and physical therapy. I had to learn to walk again climb stairs and then how to run again. One thing I have learned from this experience is family and friends are the most important things in this world and I would not have come through this with out their love and support.
Boston, Massachusetts USA
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April 26, 2009