I wrote to your organization originally in December of 2000, and have visited your web site often since that time. I wanted to share a little more of my story with your readers, and pass along a couple of the photos taken while I was still in both wound and physical therapy.
The disease blind-sided me, as I am normally a very healthy individual.Doctors at the Medical University of South Carolina in Charleston, SC informed me that while NF is typically found to have entered an opening in the skin, mine was apparently contracted from eating oysters out of season. The disease that the oysters carried is vibrio vulnificus and was the agent for the NF that was to visit me. My leg become insufferably sore and achy. (I had experienced a bad cramp in the calf muscle the same day I ate the bad oyster after playing beach volleyball for several hours in the afternoon.) I had high fevers for two days (104 and 105) prior to being hospitalized. Once in the hospital, the doctors on staff thought it to be merely an infection and treated it with antibiotics.My family was sent home to Illinois as the bacteria hid in my systemafter the initial attack and my recovery appeared to be imminent. When the NF hit for good, I was knocked for a loop.
I have no memory at all of the helicopter flight to Charleston from the hospital in central South Carolina, nor for the next 10-14 days.I know I had 5 official surgeries, not counting the daily debridement in the tanks. I was given the "forget" drug before visitsto the tank room so I would not remember, but do unfortunately remember much of what went on in there. I had my leg opened from the knee to mid-foot, inside and out, and a wound-vac inserted for several days.Most of the larger muscle mass was removed, but I was left with a little muscle and thankfully, the Achilles tendon and sheath around the tendon.I had skin grafting in several more operations, taking skin from the thigh of my right leg to cover the calf of the same leg. I was given a walking cage, copious amounts of bandaging and antibiotics, the phone number for a home nurse, and a hearty good bye just short of the one month mark since initial diagnosis.
Physical and wound therapy became important to me, and I struggled to get better with most of the calf missing in action. I developed the remaining muscle in the leg, and found new ways of moving and walking almost achieving a normal gait. One year after leaving MUSC, I was back in the hospital having surgery to repair a badly twisted leg caused by having developed the muscles that were left too much! These muscle had begun to twist the leg from the ankle and foot inward, and walking had become possible only with a leg brace attached. This surgery moved tendons, ligaments, and some muscle around, straightened my foot, and has allowed me to be able to walk, not run, fairly normally now forthe past 2 1/2 years.
I no longer eat oysters, don't walk barefoot on the beach (actually,can't walk barefoot at all - need shoes with good support), never swim in the ocean, and did I mention - I don't eat oysters! The infectious disease folks at MUSC attributed the NF to the bad oyster, and nothing has ever been established to contradict that theory. I choose to believe them.
Above are pictures of my leg taken the first week out of the hospital while still having a home nurse treating the fresh wounds, and doing physical therapy three time a day trying to gain back some strength and mobility. They aren't real pretty, but give a good impression of the damage that NF can do to a normal healthy limb when it chooses to attack. This is a errible and frightening disease. I consider myself very lucky to be alive, to have been allowed to keep what is left of my leg, and to be able to tell my story in the hopes that it may help someone else.