Lori Fuller

I contracted NF and was diagnosed on January 1, 2002. I was told that the doctors did not think I would live. At the most, they thought I would loose my right leg as my NF was in the thigh and groin. However, God chose to spare my life. It is believed that I had a rash on my leg. I vaguely remember scratching and because I have diabetes, it went to town. I have been asked so many times how did you get this. I tell them but I also warn them that healthy, disease-free people can get this also for no reason. I educate them on the symptoms and what to do because I do not want anyone to go through what I have been through. In the course of treatment, I had skin grafts, which did not take, and this resulted in massive scarring on both legs from the knees to the thighs. I now believe for this disease that a plastic surgeon is not effective for healing a wound. After fighting with a plastic surgeon because he wanted to graft me again taking all the skin from my knees to my legs on both legs, I decided to go to a wound care center where I was evaluated and had my wound measured and photographed. I was then put on levaquin, a very strong antibiotic, and was given painkillers because the plastic surgeon I was seeing took me off of the antibiotics and refused to prescribe pain meds fearing I would become immune and addicted. The wound care center also prescribed a seven day anti-microbial dressing called acticote silver which stops most of the drainage keeps the wound clean and helps it heal. As far as I am concerned, this is a miracle. When I first got my wound, the plastic surgeon prescribed a bleach and water dressing to be applied on kerlix gauze and taped into my wound, which was a soggy mess. I was recently told by someone who has a lot of contact with the patients of this plastic surgeon I was seeing that she had heard horror stories about him that she would not send her dog to this doctor and we agreed he should have known that my wound was so wet any skin grafts that were applied would slough off which is exactly what happened. When I went to the actual wound care center, it was such a big difference. This doctor is so confidant, pleasant and very knowledgeable that I attribute my life to her because if it were not for her, I would have died from the infection. I also had a line put into my chest, actually into the aorta, to receive IV meds and have blood samples taken. That was a GODSEND because I am a hard stick as it is and from having blood taken so often from the seven weeks I was hospitalized my veins gave out. A doctor came into my room and tried to insert the groshang or line into my chest with no family members present at two in the morning without any anesthesia and he kept missing. I let this go on for an hour before I literally had to make him stop because I could feel everything. He put the line in my neck because he could not get it into my chest which caused me to throw a blood clot and have a minor stroke. I lost the use and feeling in my right arm for quite a while. Eventually they took me back into the OR and put the groshang in under anesthetic. So, I literally had three surgeries in one month and because they had me on vancomyacin (does that antibiotic sound familiar to anyone out there) anyhow, I was allergic to vanco and it put me into kidney failure. Fortunately, they were able to reverse it and thank GOD I did not have to have dialysis as the kidney specialist had originally planned. It was a strange year because right before I became ill with NF, my best friend had her gallbladder out and a few months before I had it, she got it in her gall bladder removal incision. Even though she had several debridements, she still was not as sick as I was. She still has an open wound as well as a matter of fact we both see the same doctor at the same wound care center,,,yikes! After leaving the hospital, I was sent to a nursing home rehab for three weeks to learn to walk again. I had a very aggressive therapist and I didn't like her so much at the time but now I PRAISE GOD for her. Had it not been for her, I may never have gotten out of the wheel chair and walked again. And of course the meds I was on made me too sick to eat. I lost weight and for the first time ever I had people hounding me to eat, eat, eat! Ha! Ha! Something I never thought I would hear! I was released from the rehab on February 15, 2002 and boy was it good to be home. However, I was so weak even though I could walk that I could not make it up the two steps into my house. I had a ramp built on my house for my use I can walk up the stairs with a little effort now but I left the ramp in tact because I want my home to be barrier free. In August, when our very hot weather hit, my leg swelled like a balloon to three times its normal size and water began leaking out of my leg. I was already back in the hospital for a 24 hour dose of IV meds because I had contracted a staph infection in my groshang and had to have it removed. During this time, I was diagnosed with lymphedema and the water that was leaking out of my leg was lymph fluid. It was not until this time that I was told that I had my lymph nodes in my thigh removed during the debridement so the doctor could make sure he had removed all of the NF and since it is usually only ladies who have had a breast removed that get lymphedema, they never thought to tell me. My doctor prescribed lasix to remove the excess fluid which is excreted through the urinary system but it is not very effective if I am getting a linear pump - a pump about the same size as a car battery - which has hoses attached to a sleeve that goes over my leg, clear up to my thigh and squeezes the fluid out. I will be pumping for two hours a day. I have learned that: If you look around you will always find someone in worse shape. Always get a second opinion for treatment options after the debridement or a third if you prefer. Act quickly as soon as you know that you are sick get to the emergency room ASAP even if you have doubts. Better to be safe then sorry. Explore alternative treatments such as acticote. I have even had pig skin transplants at the wound care center trust me it works and this means no cutting on me. And when you get the chance, tell as many people as you can about the symptoms of NF - you might save someone's life. I am currently trying to get the news channel to do a story on me so I can get the word out about symptoms prevention and treatment, but they only do scary blips about it that scare viewers to death and then don't inform them. Recently, we have had four cases of NF locally and those are only the ones I know about.