|Ana Kinner's Survivor Story|
is Ana Kinner. I found your website when I was looking up NF to find out
more about it. I had contracted NF in January 2005 and then again in March
2005. Before I get into the long story, a little background information
of where I am. My husband and I are currently living in England with our
daughter and son. My husband is stationed here at RAF Mildenhall; he's
in the US Air Force.
On January 17, 2005, I felt fine. My left foot had flared up with eczema, one little bit was infected. I had a doctor appointment for it on the 18th. I had been "doctoring" my foot (the evening of the 17th) and I had leaned over to pick up a tissue I had dropped on the floor and it felt like I pulled a muscle in my left thigh. Right before bed I had told my husband about it because it was aching. I took some Tylenol and went to bed. The next morning I woke up feeling kind of icky, like the flu was coming on. Went to my doctors appointment, was prescribed some medicine for my eczema. My leg was hurting, but not enough where I thought it was necessary to tell the doctor. I figured he would just give me Tylenol anyway. (Boy do I wish I could re-do that doctors appointment!) So I went home, took some more Tylenol for my "pulled muscle" and went on about my day, still feeling like I was coming down with the flu. By the afternoon I was sick. I had to pick up my daughter from an after school club that afternoon, I went and got her early. Came home and went straight to bed. When my husband got home from work, he also thought I just came down with the flu. He went and got me the normal crackers, applesauce and ginger-ale.
The 19th was filled with sweats, chills and getting sick. My temperature would go up and down and my thigh was really starting to hurt. I had developed what I thought was a bruise. It was about the size of a quarter and reddish purple. But still I just thought I had a really bad case of the flu. It was going around and I'm a parent with two kids in school.
By the 20th I could barely walk. The bruise on my thigh was bigger and redder. I couldn't stand for anything to touch it. My husband was getting really concerned. He was talking with some co-workers and telling them he'd never seen me down with the flu this bad. Like most Mom's, even when we have the flu, we're up doing something at one time or another, but I was in bed or in the bathroom. His supervisor was letting him come home from work to get the kids ready for school and to check on me. He finally convinced me to at least call the Home Care nurse the next day. I grudgingly agreed, I was still convinced it was just the flu. But I figured they would schedule an appointment for me, so I had my husband help me take a shower. I was fine until I got out and almost passed out. You would think we would've gone to the emergency room then. We didn't. (Hind site I'm thinking, how stupid could we be???)
Friday morning, the 21st, I called the Home Care nurse. She told me to get dressed and to get to the doctor right away. She was making me an appointment for later in the morning, but to tell the desk clerk to have the doctor see me sooner if possible.
I barely walked into the Family Practice clinic at RAF Lakenheath. As soon as we checked in they got me into a wheel chair. It wasn't long before the doctor saw me. Then the tests were ran. First one was for the flu virus. Negative. Then a bunch of blood tests. Then x-rays. They couldn't figure it out. They first thought I had pulled a muscle and it got infected and I had dead tissue that needed to be removed. Then I started to feel worse. I spiked a fever of 103 and was feeling awful. Doctors in other areas of the hospital were contacted and consulted with. They re-took my vitals (again), re-evaluated everything and decided I needed to be admitted. They needed to hook me up with fluids to get my heart rate down.
That night was more blood tests. More x-rays. Not holding down dinner. A bunch of doctors coming in asking questions. By the evening Dr. Marchessault decided that surgery was needed, however, they didn't have adequate after surgery care staff because of deployments, so they were sending me to Addenbrooke's NHS in Cambridge in the morning.
January 22nd, I was taken in the morning to Addenbrooke's by ambulance from RAF Lakenheath. Dr. Marchessault rode with me. When we got there, Dr. M. personally made sure that the staff at Addenbrooke's new everything he knew that was going on with me. I was admitted in, more x-rays taken and then off to theater (that's what they call the operating room here in England) for the first surgery. They removed a section of my left thigh approximately 3 inches deep and 7 inches across. When I came out of surgery, my heart rate was still high and my fever still hadn't come down. The doctor’s were worried and ran several tests. After two hours the doctors finally let my husband see me. They didn’t let him see me because I still had a fever, my heart rate was still off the chart (too high) and my oxygen levels were so low that I couldn’t stay awake. My husband said just as he entered the room the nurses started buzzing around me and one said "We're losing her." Then I went into a coma like state. They told my husband that if I didn't come out of it on my own, I could end up in a full coma. My husband started talking to me and rubbing my hand as the nurses worked on me. And somehow I gathered a huge breath of air and sat up in the bed. The nurses had stabilized me. About an hour or so later, I woke up. I was still in the recovery room. The doctors had sent my husband home when I had fell asleep. Then, I remember another doctor looking at my leg, and then pointing and saying "See all that red, it needs to be taken off." Apparently he was a specialist from London and knew exactly what I had, necrotizing fasciitis. So back into theater I went. When this surgery was finished, 2/3 of my thigh had been removed.
After that surgery I was taken to Neuro Critical Care Unit. That was Sunday morning, the 23rd. They kept me sedated through Tuesday, the 25th. I was told I had been taken to theater again to have my leg cleaned up and to make sure there wasn’t anymore “red” trying to come back. I stayed in the NCU until Thursday when they took me up to Ward D-4. I was in a side-room away from other patients to make sure I didn’t get sick with something else.
On Saturday the 29th I had a tram-flap and skin graft surgery. Mr. Malata had basically given me a tummy tuck and used my tummy to partially reconstruct my thigh, using the skin grafts from my right leg to cover where my tummy didn’t. I stayed on Ward after that surgery. About a week later I was taken back into theater to check to see how the grafts took (they took 100%) and to clean the donor leg. I was eventually taken to a bay room, where I shared the room with two other patients. And on Feb. 14th, I was discharged and sent home.
The next two weeks were not fun to say the least. I pretty much stayed in bed. I got up to walk my laps up and down the hallway to strengthen my legs. My right leg (the donor site) was producing proteins and was just nasty and smelly. We would go up to RAF Lakenheath surgical clinic to have check ups and bandages changed. By Feb. 26th I was feeling really good. Just annoyed with yucky protein stuff. Then on March 1st it all started again. I wasn’t feeling too good. But it was that time of the month and I always feel horrible on the first day. I felt a bit warm, but for me at this time that was not unusual. By the afternoon I knew there was something wrong. I felt really bad. My husband had checked my legs, everything looked fine, but I ended up with a fever of 101. He took me to the ER at RAF Lakenheath, which is 15 minutes from our house on RAF Mildenhall. By the time we got there I had a fever of 102 and red spots on the left side of my left thigh, where I had the necrotizing fasciitis before. We asked the doctor what she thought, and she said she felt that it was “it” again. The best thing for me was to go to Addenbrooke’s where they knew how to take care of me. “It would be an injustice to you to keep you here when we know they can give you the exact care you need at Addenbrooke’s.” She called Addenbrooke’s to find out what kind of antibiotics to put me on. Started me on those and then off to Addenbrookes. Two doctors saw me when I got there. After looking at me and going through my records, they were not very optimistic. They said they wouldn’t know for sure until they took a tissue sample, but it didn’t look good. At that point I told God, if this is my time so be it. It’s in Your hands. I can’t do this anymore. I don’t want to leave my babies; I don’t want to leave my husband. But I’m tired. I leave it up to you, God. I felt a sense of relief and calmness. The doctors took my husband aside and told him to say his good-byes because they didn’t expect me to come out of surgery. I looked up at the nurses who were wheeling me to theatre, they were teary-eyed.
I woke up in the Neuro Critical Care Unit on Wednesday the 2nd of March, intibated, and a large hole where they took the sample from leg. A familiar nurse, Mark, was taking care of me. He joked with me about being back. We finally got the tube taken out so I could breathe on my own. I had had to figure out how to breathe in rhythm with it so I wouldn’t gag. That didn’t last long. I was taken into theater once more to make sure they got all of the redness. When the results came back, I had gotten the strep A virus again but we caught it in time. If we had waited one more day, it would’ve turned into NF and things would have been VERY different.
By Friday the 4th, I was sent up to Ward D-4 again. The nurses couldn’t believe I was back again for the same thing. On Monday morning, they put me in a side room by myself. There was a concern for MRSA, and they weren’t taking any chances with me. They also put the black sponge and pump on my leg. That stayed with me until they stitched me up on the 14th. They kept me in the hospital continuing me on strong I.V. antibiotics until I was discharged on the 21st. I stayed on two oral antibiotics for a month and then down to one until around September.
I have since finished out my physical therapy and am just going in
for check-ups. I have one more surgery to go in the fall, just to tidy
things up a bit.
RAF Mildenhall England (US Air Force)
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July 2, 2005