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My Experience with Necrotizing Fasciitis

My Experience with Necrotizing Fasciitis 

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  #1  
02-05-2020, 02:29 AM
shelly49
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My Experience with Necrotizing Fasciitis

I’ve been on this site for years, but this is my first post. I’ve been trying to get the courage to post this, and since yesterday was the 24th anniversary of the worst day of my life, I figured I’d do it now. I’m sorry the photos are a bit out of order.

I had Necrotizing Fasciitis in the abdomen area -- I contracted it during a "routine" laparoscopy. This was my third one, so when I woke up and did NOT feel just a little achy and sore, I knew something was seriously wrong. I could not even lay still -- I kept thrashing around in the bed from the pain and the nurses were just walking by me thinking I was just looking for attention. Finally, one of them stopped at my bed and said "what do you want me to do for you?" and my exact words to her were "just shoot me". I literally wanted to die the pain was so bad, and little did I know, I WAS dying. I could not even walk -- they had to take me in the wheel chair just to get across the room to go to the bathroom, and I could not urinate--just sitting on the toilet was so painful. They kept me overnight and the next day I was able to urinate a tiny bit, and I convinced myself that I was feeling better, so they sent me home. That night, the pain just kept getting worse. Luckily, my husband had thought to rent a walker from a medical supply center which was supposed to be for after my laparoscopy -- but boy did I need it -- I couldn't walk again, and when we took my temp, it was 102. My husband called the doctor and they called right back and we asked if I could just go to our hospital which is literally around the corner from our house instead of going all the way back to Boston -- at least a 30 minute ride, and they said it would be better if I go back there since they had my records. After already being up all night, my husband knew he couldn't drive so my brother came to pick me up and took me. This was now late Saturday night. I was throwing up brownish/blackish stuff, and I had numerous tests. One of the incisions from the laparoscopy was about 2.5” long and on my right side, right about where my hip bone is. It was all red around it, and the doctor took a Sharpie and outlined the redness. Just a few minutes later he came back to check it, and the redness had already moved beyond the outline. It took them until Monday morning to finally diagnose me with Necrotizing Fasciitis, and we had never heard of this before. We were told that if I didn’t have surgery immediately, I would likely die.

I went into surgery and they did what is called debridement, or cutting the infection out. That’s the only way to get rid of it. I was taken back into surgery for the next several days in a row for more debridement. When they finally got it all (after 5 surgeries) and were going to close me up, they couldn’t because my white blood cells were high. I was left WIDE open for TWO WEEKS-- I was cut completely across my abdomen from hip to hip -- a nice big smiley face. It was packed with saline soaked gauze and had to be changed three times a day. The dressing changes 3x a day were literally TORTURE because the gauze would dry up and stick to my insides, and I screamed and cried through EVERY SINGLE ONE, even though I was on a morphine drip and was given several other meds before each one. The first time they overmedicated me and I was hallucinating -- I kept telling my husband to get the nurse to come in the room and clean the graffiti off the curtain, and I asked where they just took me to do the dressing change, but they did not take me anywhere -- I just went on a little trip in my mind! After the first week when I was supposed to go to surgery to be closed up, my white blood cell count was too high so they canceled it at the last minute. I had developed a large pus sack on one of my ovaries -- so I ended up having a very painful procedure to drain that, and was finally closed a week later. To sum up, I was in the hospital 20 days, had 5 surgeries within the first 2 weeks, and then another 2 after -- there was a spot in the incision that did not close, so I had a visiting nurse 3x a day at my house to come and stick a q-tip in and push on my belly to get the fluid out -- that was fun! Then it started to close, but it was not done draining, so I had to go back to the hospital and they had to enlarge the hole again to about the size of a half dollar. When I was closed up, they left me with what they call a "dog ear" -- I had this ugly hunk of skin at the end of my scar that the doctor said "he figured I could have removed later" -- like I would REALLY want to have another surgery! I did end up having it done though, and my incision drained for 88 days after I got out of the hospital. This nightmare began on February 2, 1996—24 years ago this past Sunday. I had a c-section in 1999 with my son, and then a full abdominal hysterectomy in February 2011, so I have a few more scars added to the collection, but I also have a beautiful boy! I still have pain and numbness that will probably never go away, but at least I am here. I wanted to share some of my photos with my story. I have to say, I haven't looked at these in a long time and it was very difficult to go through them, but I wanted to share them in the event they could help someone else deal with this horrible disease.
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  #2  
02-05-2020, 03:21 AM
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Re: My Experience with Necrotizing Fasciitis

Thanks for the story which is in fact a true horror story
That Hospital did a royal fuck up when it comes to diagnosing and acting properly imo
Lucky to be alive plus you have a son now so
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  #3  
02-05-2020, 06:55 AM
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Re: My Experience with Necrotizing Fasciitis

Yeah. What KH said. Brave, to go through what you did, and then tell the story here. Hope all is brighter, now.
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  #4  
02-05-2020, 08:15 AM
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Re: My Experience with Necrotizing Fasciitis

At the end of the day, you made it alive and you can have sex again i'd consider that a win-win. Sue the hospital if you can. Thx for posting
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  #5  
02-07-2020, 07:27 AM
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Re: My Experience with Necrotizing Fasciitis

Damn, what an absolutely hellish ordeal.
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  #6  
02-07-2020, 07:41 AM
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Re: My Experience with Necrotizing Fasciitis

Damn, that's horrendous. Glad you got through it.
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  #7  
02-07-2020, 04:56 PM
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Re: My Experience with Necrotizing Fasciitis

I certainly hope you sued that hospital so hard, they’d have to take out a loan to piss
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  #8  
02-07-2020, 09:09 PM
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Re: My Experience with Necrotizing Fasciitis

That must have been incredibly painful! Thank you for sharing. The scarring looks surprisingly well I have to say! Your skin did a good job, despite all the surgeries and cutting
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02-08-2020, 01:35 AM
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Re: My Experience with Necrotizing Fasciitis

All I have to say is that NF is some bad shit and awesome that you are here with us now!
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  #10  
02-10-2020, 10:41 PM
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Re: My Experience with Necrotizing Fasciitis

holy crap that is absolutely terrifying! you are incredibly strong for surviving that and telling your story. i'm no doctor but i am under the impression gauze packing in a wound is supposed to remain wet like... jesus
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