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Chuck O'Donnell's Survivor Story
 

Two years ago this past April I was diagnosed with NF but I was too delirious to even know what was going on at the time. I remember seeing an old friend who was going to be my anesthesiologist for the initial surgery, and I remember saying hi to her, and not understanding why she was crying, and not happy to see me. And I didn't know that I was about to be operated on to save my life either. Almost a month earlier, my sciatica had acted up, with terrible pain, but the worst usually lasts only a few days, but it dragged on and on, for nearly a month. I had started collapsing at home for no apparent reason and when I fell off my chair at dinner my wife thought I was having a stroke and took me to the ER at Overlook Hospital in Summit, New Jersey. I was admitted and various tests were done over four days, and if the horrible pain in my leg was brought up, I always said I had sciatica problems from three herniated discs. So nothing was found and they sent me home. I guess I was home for three days, and I was just talking total nonsense, and fell again, and my wife rushed me back to the hospital, where I was admitted again. I do not remember anything of this stay, but neurologists did tests, spinal tap, etc., but found no reason for my confused state. I had a fever for no apparent reason, and luckily, an infectious disease specialist was called in to look at me, and he asked my wife where my pain was, and they rolled me over to look at the back of my right thigh, and there was two spots on the skin and the doctor dragged my wife out of the room into the hallway and told her that I had NF and that I might die and they literally ran me down to the OR and they had me on the table in less than an hour of Dr. Greenman's discovery of the infection.

My NF developed internally and the surgeon said that they removed a softball sized puss ball that surrounded my sciatica nerve.....good reason for the pain I had, and it was the weak spot that the Necrotizing Fasciitis honed in on. They had to remove all three of my hamstring muscles, and cut me from the back of my knee to my waist. But I was lucky, as the surgeon, Dr. Mandel, had warned my wife that he might have to come out and have her sign permission to take my leg off if he had to, but didn't. I do not remember most of the week or so I spent in Intensive Care after the surgery. I have a few snap shot like memories of a few incidents. One I remember was screaming my head off. It was during one of the debridements that the plastic surgeon, Dr. Gardner was doing, and he was going to oversee my wound care. I am a pretty laid back calm guy, and had never screamed in my life before for any reason. I was moved out of the ICU and put in a private room on a surgical floor.

As time passed I came to fully understand what had happened to me, and was told that I would not get home for six months, with long term wound care, skin graphs, therapy, etc. Man that hurt. I had five kids at home and my wife of twenty five years, and all my pets, and the thought of being away from them for half a year really got me depressed. As a matter of fact, my 25th Wedding Anniversary was spent in the hospital. But, then came the wound care. Up until this time, I had a lot of severe pain problems. The disc problems, and I had a bunch of crushed nerves in my neck from a bad whiplash injury. I had constant headaches that would get so bad that it felt like my eyeballs were going to explode out of my head. I had tons of pain meds and steroid epidurals to try to relieve this pain. But the wound care pain was on another level of pain that I never knew existed. I was on a Dialaudid drip 24/7, another dialaudid button that I could press to release more every six minutes, and the wound care nurses would come in an give me a large dose of more in my IV ten minutes before they started the debridement, and had to stop about halfway through, to give me another shot of it. I would roll up the end of the sheet and bite down on it so I wouldn't cry out as they were pulling flesh out of my leg. They were so kind and gentle, and went so slowly, they were truly Angels. It just was something that hurt so bad there was just no getting away from it for me. I think a month and a half had passed by and then they put a suction drain in my leg, which eliminated the need for the daily debridements, and then I got it once every three days. I was slowly regaining strength by eating everything that was put in front of me. The nutritionist had made it clear that the only way I would get better and grow some muscle would be from eating, and if I didn't start gaining weight they would put me on a feeding tube. And so I got used to hospital food in a hurry. Actually they had been so nice and told me that they would make anything for me to eat, and so soon I was eating Philly Cheese steaks, BLT's, and cheeseburgers. During the long time spent with my two wound care nurses, Stephanie and Virginia, they told me that they had had only four cases of NF developing internally and all of us were diabetics. In fact, they had told me that there seemed to be four common criteria for many of the NF patients they saw. Those four things were diabetes, steroid use, alcoholism, and kidney disease. I was already a diabetic, and had just spent ten weeks of steroid epidurals in my neck along with steroid trigger point injections there as well. There IS a connection to steroids, and I just started a series of them again a week ago, and man am I taking care of any wounds I may have. After I started the suction drain, my wound was healing at an amazing rate. I had the skin graphs done in June, long before the October date they thought they would be doing it. I spent a couple more weeks in, the graphs took, and then a blood clot developed in my bad leg, and spent a little more time in the hospital for that, and went home in late July. There was home care for my wound, and then months of physical therapy.

There are a lot of things I never will be able to do again, but I am thankful that I still have my leg, and can get around okay. I fall more often, but it is a lot better than being in a wheelchair for the rest of my life. If I am going out where I am going to do much walking at all, I have to bring my cane. But I am Thankful for what I have. The care I received at Overlook Hospital was as if I was the King. I am certain I could not have been treated any better any where in the world. The nurses and aids were in and out of my room constantly asking if there was anything they could do for me. I love them all for the care they gave me. It made those three months on my back a lot easier to take. I know that some with NF get so much worse than I, organs shutting down, amputations, etc. Why I did not get it worse no one knows. My surgeon told me it was like hitting the lottery to get NF, the odds at millions to one. Some luck. I offer all who have had this terrible illness my support and prayers. Feel free to write if you like.


Chuck O'Donnell
cjod@optonline.net
Watchung NJ USA
May 2006
 

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June 18, 2006