|Al Alper's Survivor Story|
Around the end of April 2003, I was feeling horrible; I had a bad flu bug and later a weird abscess on my belly just above my groin. The flu kept getting worse and the abscess kept spreading and getting more and more painful. We are talking here of a 12 on a pain scale of 1-10. Finally, something had to be done - had never felt so ill in all my life. I got dressed, packed my walkman and a book and called an ambulance. I figured I would be in the ER a few hours or overnight at most so made no special effort to tell anyone where I was going or what was happening. The ambulance arrived and I got in and...Remember nothing else that happened during the next 5 weeks!
Well, I do remember some tiny bits and pieces: For example, someone that looked like a surgeon apparently slicing a huge strip of flesh off me and looking up at me in surprise. And I remember twice being awake and completely unable to breath (I was later told that I had had a tracheotomy and a machine breathing for me....). And so, what did I have? Necrotizing Fasciitis, popularly known as the flesh eating bacteria. Something I remember seeing some news programming about several years earlier. I even remembered thinking boy, glad it’s not me!
I had 23 surgeries over the next 30 days to debride the area below my navel and just above my groin from flank to flank and a branch of infection along the right side of my groin. Debridement is the cutting away of dead and or infected or otherwise unviable flesh. I went into septic shock from the bacteria which brought on respiratory arrest, kidney and liver failure. I had a chest tube to keep my lung inflated (a tube entering my chest between my ribs) a tracheotomy with a pipe inserted through neck to my trachea and a machine breathing for me, dialysis full time, a central line and 7 other IV's running full bore all at the same time.
I was kept sedated the entire 5 weeks that I spent in ICU. Due to the anesthesia, I do not remember any of this. All I’ve told you from the time of my ambulance ride till I regained ‘consciousness’ 5 weeks later I have pieced together from conversations with my surgeons (5 or so of them,) my nurses and by reading the synopsis of my medical records (the synopsis alone runs 163 pages!) I still haven’t fully pieced together the first few days of my hospitalization or the time in the ER itself. I knew from the medical records that I was initially misdiagnosed with a variety of things, including Hydradenditis Superativa and Cellulitis.
I lost my voice due to the tracheotomy and I needed 3 weeks of speech therapy to get it back. I had all my leg and arm muscles atrophy due to 60+ days of immobility and had 3 months of physical therapy learning to stand and walk again. I have a Greenfield filter in my main vein to try and catch any blood clots that night form and kill me....
I was blessed to have been treated by one of the top rated trauma surgeons in the nation. It’s the only reason I'm alive. Since then, I have had 2 more surgeries, bringing the total up to 25. Both were to ‘revise’ the wound, or, more simply, to change the way the wound was shaped in order to bring the edges together eventually for closure. My wound was left wide open from the beginning of June, 2003 until it was finally sutured closed in the second of those 2 surgeries in the middle of October. I expect to have the last of the stitches removed in a few days (it is the day after Thanksgiving as I write this – I have had a lot to be thankful for this year.)
I now have a scar running from hip to hip with a branch running all the way down my right groin. At my left hip, the scar turns and heads up half way to my armpit. I am fortunate in that I did not require any skin grafts – I was hugely overweight when this happened to me and after all the surgeries, there was still enough excess skin to allow the wound to be pulled together and closed. All in all, with the surgeries removing flesh and the atrophy of my muscles, I lost one hundred and fifty pounds of weight. I also kicked the smoking habit thanks to three months and four days of hospitalization.
Just to keep things interesting, during my hospitalization, they also discovered that I'm diabetic and that all this has left me clinically depressed. I live alone and managing life with a gaping open wound the size of Kansas on my belly has been…interesting. I also now have something called traumatic neuropathy. Basically, my legs from about mid-calf down and my feet are numb. I can sense pressure, but not otherwise feel touch. But, I do have horrible, intense, and ceaseless pain. It has been a real challenge to receive proper care for the pain I’ve been having. We in this country have allowed our government to so completely get out of hand on the subject of narcotics that people in serious, legitimate pain have an absurdly difficult time finding relief.
As of today, there are only a few small openings left in the wound, all told under an inch altogether. There are now only 11 stitches still in me, and they should go next week. The total wound is forty-eight inches long. I can now walk about 1 block before needing to sit and rest. I can stand for 5-10 minutes at a time. For longer excursions, I still use a wheelchair, but hope to rid myself of this in the next 30 days or so.
I detest television and have been keeping myself occupied by playing a online adventure game called Everquest ™ which has kept me sane. It is a game that is massively multiplayer, meaning that you are playing the game at the same time as tens of thousands of other people are, and you can interact with many of these people. Within the game setting, I belong to a guild, a collection of people with a like set of goals and expectations from the game. I have known these people, only through the game and in a few cases via telephone, for about 2 years.
When I was hospitalized, I of course vanished from the game. My friends there became concerned and launched a hunt for me. As many of them, purely from happenstance, are in law enforcement, they eventually tracked me down and a stream of get well wishes and cards and balloons soon followed while I was in the hospital. After my release, these wonderful people also got together and arranged for me to get a special table with telescopic arm to hold my monitor and keyboard, an overstuffed recliner to sit in and a considerable amount of cash to help me through the lean times.
My employer here in Florida created a job for me that I could do from home. At the end of the day, his business phones are now transferred to my home where I act as his after hours answering service and overnight dispatcher. Slowly but surely, my life is coming back together after an, as yet incomplete, odyssey of illness and healing. And oh, I now have a really nifty wound to show off when people get to a point of comparing such things (usually very late at night in a bar.) Further, I no longer have a belly button, so I can now tell people I was not born the normal way: See, no navel! I’m leaning towards the idea of telling folks I’m an alien! <Smile>
I am acquiring copies of some of the images made of my wound and will send them as supplements to this story when they arrive. All my best wishes to the other survivors of this horrible disease and my deepest and sincerest condolences to those that have lost loved ones to this disease. People are welcome to contact me at firstname.lastname@example.org.
Please note: The following linked images are very graphic and may be upsetting.
Copyright © 1997-2003 National Necrotizing Fasciitis Foundation (NNFF)
All Rights Reserved.
July 17, 2004