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Sheila Toppi's Survivor Story
 
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 if 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 I am sure you know -- 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 almost 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'll try to condense a little -- it took them until Monday morning to figure out what was wrong and of course we had never heard of this before. I went into surgery and was also left wide open -- I was cut completely across my abdomen from hip to hip -- a nice big smiley face. As I am sure you know, the dressing changes 3x a day were NOT fun -- 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! I ended up being open for 2 whole weeks with dressing changes 3x a day 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. 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 (sorry so long!) I was in the hospital 3 weeks, had 4 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 in 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 was in February 1996. I had a c-section in 1999 with my son, so I have yet another scar 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.

Please note: The following linked images are very graphic and may be upsetting.

Images of Sheila's Experience

 


Sheila Toppi
thetoppis@comcast.net
Massachusetts
July 2003
 

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August 26, 2003