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Jen’s story

Jen started to feel a stinging pain in her leg the day after a day by the creek in a city park. After 4 days she was rushed to hospital where they battled to save her leg. Here's Jen's story.
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My name is Jennifer I was 47 years old when I contracted NF. I really have no idea how I got the bacteria in my leg. I was in good health no red flags.

I was walking through a city park with my son. I remember I did not have socks on as I sat by the side of the creek worrying about snakes. It was Nov 09 and 72 degrees outside. Beautiful warm day. My pants where wet from the creek and I had scratches on my ankle from the tall grass. When we left and I had a bad feeling. But proceeded to the store, my wet pants dragging on the floor.

The next day I took a shower and felt this horrific sting/bite on my ankle. SPIDER BITE? Man, that feels really different. I thought I needed to look at that as the day went on I forgot about it, till I started having a high fever that evening. I did not think about the stinging and felt it was not connected.

I lay in bed for 3 days really not feeling well. My leg began to hurt so bad that I finally went to the doctor. I felt nauseous and could barely walk on my leg. I was agitated and knew something was wrong. The doctor didn’t think it was a spider bite, that I had no fever. While I was telling the doctor to look at my leg (something is not right here) its bright red/purplish and she diagnosed cellulites. She had told me what I wanted to hear, that I would be ok. I went home took the prescribed antibiotics and prayed….

The 4th morning I got up and fell out of bed. My ankle had turned BLACK. I thought of gangrene. I started screaming for my husband.

By the time I got to E.R my kidneys had failed, infection had spread through my blood stream (septic). I was hurried to the ICU. The last memory I have is of a doctor writing on my left leg.

“The only way to know if it is NF is to cut her leg and find out, if not she will have a small incision, but we have to operate” the surgeon told my husband.

The first surgery was supposed to last for 1 1/2 hours. It lasted 4. YES, it was confirmed I had Necrotizing Fasciitis. Strep A. I was in a coma. My foot and ankle was debrided.

The next day, all of my levels had tanked. My upper calf was hot and so was my upper thigh. They told my husband my chances were less than 30% (of survival) they might have to amputate the leg. ” I would call in her family now, this is not good she is not responding and she should be. ” I was floating in my coma totally unaware I was in grave danger.

They took the rest of the infected skin/tissue anything that had been affected. They also made 5 deep incisions in my upper thigh, for a wound vac. They wanted to be sure the infection was not still travelling, however, out of the 5 wounds brownish/blackish goo was being sucked from my body.I was in a coma for 13 days. I awoke, not knowing I was now at another hospital that would either amputate the leg or try to cover this large wound with skin grafts. They finally found a plastic surgeon that thought she could cover the top of my foot, up to my knee all around my leg with skin grafts, taken from my upper thighs.

I spent 32 days in the hospital. I had a wound vac, which protected the leg. Which was placed back on even after I had the grafts. I was in the twilight zone, too afraid I was going to die and too afraid to ask what kind of infection I had.

I left the hospital (unwilling) with over 100 staples and stitches in my leg. I could walk 3 steps on my walker. I was weak and scared. I wanted to stay in the cocoon the hospital provided me. But they worried about my chances of getting another infection. OK, now I’m ready to leave!

After horrific bandage changes, a foot that wouldn’t go all the way down. I realized the journey now was to me almost harder than it had been in the hospital. It took me over a year to walk without a wheelchair/walker/crutches/casts/braces and cane. I still have a limp in my leg. But it is a small price to pay.

It is now 2 years later. My left leg (slim) is disfigured horribly. I look like I have been bitten by a shark I have nerve damage which causes me alot of pain, balance issues and even self image issues. It has taken me a long time to look at Slim, like a trophy, a testament to all that I have been through.

The fact that I am still here with my leg is nothing short of a miracle I know it. and I love that I am looking at my own toes. I almost lost them.

I will always wonder where this NF came from. How could the doctor not know? Why wasn’t I admitted to the hospital? If I had waited, even a few more hours I would not be here.

I am humbled and grateful. I do not focus on the why me? I focus on this is bigger than me, now what are you going to do about it?

I am now a germaphobic and NF has robbed me of my innocence. I have a 9 year old and am forever worried about germs. I scream inside mostly, otherwise I wouldn’t leave the house.

I now try to look forward. Without trying to scare people of a “flesh-eating bacteria” I explain to them my story. I want this to be on their radar screen as it wasn’t on my doctor or mine. I would have asked about it IF I HAD KNOWN. I read everything, how could this NF be out there and I wasn’t aware of it? I have several friends that say because of my story, they have asked about MRSA or NF and in two cases it made a huge difference.

As I write this, I just got done walking on the treadmill for 50 minutes. My skin graft is tight, my leg hidden by my pants. It is only a matter of time that I will walk down the beach with my funky looking leg, begging and hoping people will ask what happened.

I want to tell the world about NF. How that spot on your body that is bugging you can be more than you thought. CHECK it out. Don’t wait, and ask the questions… I wish I would of insisted on another doctors opinion or a simple blood test could of showed my elevated white blood cells count. Who would of thought that I could have a RARE infection? Is it really that RARE? Education of NF to the medical community as well as us civilians is the key.

I’m not giving up till I give out.

Jennifer from the USA

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