|Barbara's Survivor Story|
can explain how or why I got it. I was run down, so my immune system was
a bit low. That's about the only thing all the medics agree on......I
was pretty stressed (pending job change, husband's job change, two pregnancies
in two years and so kids aged 2 yrs and 10 months causing severe sleep
depravation - oh, and a house move thrown in).
The second week of January, I had what I thought were a couple of small boils on my buttox (in retrospect, I think they were something else, maybe impetigo - I found out a couple of weeks ago that I was exposed to it over New Year), then some soreness and inflammation around my groin/upper thigh. On Tuesday the 8th my doctor thought it was another boil coming up and told me to come back when it had formed the head so she could lance it. Then followed 2 days of flu-like symptoms (sweats, shivers etc) with the soreness in my leg become severely painful and the inflammation spreading (but not much). I went back to her on the Friday morning - overnight Thu/Fri the "head" had formed a very horrible pus-and-fluid blister (which I now know is the classic NF blister) and the inflammation had spread.
She told me it was a deep abscess with accompanying cellulitis (she had never seen a case of NF), which would need incision and drainage under general anaesthetic. They burst the blister and cleaned and dressed it at the surgery, then sent me to A & E at my local hospital where I spent 15 hours on a trolley, the first 10 of which were without pain relief, fluid (despite dangerously low blood pressure) or antibiotics. The joys of the British National Health system. I have private health insurance but they did not find me a bed in a local private hospital until the next morning.
I was operated on Saturday morning, Jan 13th, and have only very vague recollections of a post-op discussion with the surgeon. They operated again Sunday morning, to make sure they had cleared it. They thought I might have to keep going back to surgery. They cut out a strip of my upper right thigh about 12" long, 2 - 4" wide, and 1" deep, running from the inside up along my panty line to my hip bone. At least I didn't lose my leg.
Luckily I was never ill enough to need intensive care (although the anaesthetist told me a couple of weeks later that they thought I would). On the Sunday afternoon the surgeon told me and my husband what had got me. We knew straight away what it was (there had been a lot of press coverage about the "flesh-eating bug" here in the UK in about 1994/1995) and were in shock. But at least they were also saying that they think they had got it. I was on heavy IV antibiotics of course and, luckily, didn't need further cutting up, although there was some skin inflammation still. The microbiologist (my "Bugman") told us 3 days later that the infection would have cleared within 2-3 days, so I relaxed a bit after that.
I stayed in hospital another 2 weeks (3 in total) because I needed a skin graft. Apart from those first few days, I felt fine during the time I was waiting for the graft operation, which went very well. The day I met the plastic surgeon I told him I was not remotely concerned about the graft - I wasn't either before, during or after. I was remarkably pain-free throughout most of those weeks too - thanks to a very high pain threshold I think!! I was on antibiotics only for two-and-a-bit weeks, and I was discharged from hospital about 10 days after the graft.
I'm an extremely positive person and I would have put it all behind me and got on with getting better. On Sat Feb 10th, 6 days after I got home, I noticed a red patch appear just below the graft on the inside, with accompanying soreness. I went into a complete blind panic. I called my wound nurse, went down to hospital and was re-admitted immediately and put back on IV antibiotics.
They checked me hourly, marking my leg with a pen to map the spreading inflammation, and decided each time whether they should let it go or do surgery. I was in complete terror. I thought I was going to die, that I had NF back again. It was the worst 36 hours of my life, and of my husband's. Luckily, it turned out to be cellulitis ("a simple Strep A skin infection" said the consultant).
Now, as far as I'm concerned, there will never be anything simple about
a Strep A infection ever again - even a sore throat! I stayed in another
9 days on the IV drugs -they would not let me go until the infection
had completely cleared. I'm on orals now for 28 days. They're doing
tests on my immune system to see if anything strange
My mobility is about 80% already, and expected to return 100% in the next couple of months. My plastic surgeon told me yesterday I can go back to exercising (yes, I was one of those people who ate properly and exercised regularly. Makes you wonder) as long as it's gentle like yoga. I'm moisturizing both legs (donor and graft sites) 3 times a day (down from 5!) and it's all looking good. At least as good as a chunk from a leg can look :-)
By far the hardest part of the last few weeks has been worrying about my husband and kids, and the loneliness of separation from them. They've been without their Mum for a month and it could have been a lot worse. All my worrying has been for them - what would they do without me, how would they cope, how would my husband manage 2 small kids and a new high-pressure job? (Luckily, we have a fantastic nanny, great friends and perfect next-door-neighbours, all of whom pitched in to help).
It's definitely the emotional recovery that's more difficult, particularly because of the secondary infection. Who knows if that simple Strep A cellulitis would have turned nasty? Bugman doesn't think so - says he knows quite a lot about NF and has never heard of a case recurring anywhere in the world. He thinks it's all been just 'bad luck'. Will I be forever in fear of Strep A bacteria, that lives in and on most of us? Will I be forever susceptible? (Bugman doesn't think that's possible - says I just need to be sure my immune system is strong - the usual recipe of eating right, exercise, plenty of sleep and no excessive stress). Won't stop me thinking.
I learned that I'm not afraid to die. (I always thought I wasn't, but you never really know until you are tested, do you?). I learned that I am absolutely terrified of the pain I would cause my husband and two tiny children if I did. My kids need their mother. My daughter, aged 2-and-a-half, took it all in her stride the first time I was in hospital, but since my return home after the second, has woken several times every night screaming "Mummy" and is very very clingy at home. She had her Mummy home, then I disappeared again suddenly. That's very scary for her. Luckily, my little boy is too young to know what's happened and is fine.
I won't return to work, at least for the foreseeable future. Although I'll always have that chunk out of my leg, the scar will fade to pale over time, as will the donor site. They don't worry me. I just want to get back to 100% health - my family need me that way.
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April 9, 2003