|T. S. Bolton's Survivor Story|
I was released from the hospital on January 2, 2004. Happy New Year. After just over three months in the hospital due to an attack of necrotizing fasciitis, I was well enough to continue my treatment at home. Not in the way we normally think of being well, but able to start the slow process of getting back into the business of living my life. Things were anything but normal and I was anything but well. Lets back up a few months.
It all began in late September, 2003 with a pain in my right hip. Since I had trouble with the other hip earlier on in the year and my chiropractor reset it just fine, I went to him but x-rays showed the hip was fine. He gave me an adjustment anyhow and it felt a little better so I thought I was out of the woods. Yeah, right. That night I woke up with the sweats, just unbelievably hot. An hour later I was freezing to death. I remember limping to the heat controls and turning the thermostat up to 80 degrees. Three wool blankets and I was still freezing. This passed and the chills returned.
The next day I couldn't straighten the leg, and my chiropractor referred me to an orthopedic specialist at a local hospital. It was too painful for her to straighten the leg to examine it so she told me to go to the emergency room. Typical male attitude I went home thinking it might clear up on it's own in a day or two. It did not. The same fever and chills hit me that night.
I awoke up before dawn unable to walk at all and knew it was time for the trip I should have made to the emergency room two days earlier. I called a friend about 3:30 a.m. and he took me to the emergency room at the county general hospital, and after I described my symptoms I was quickly admitted. For a long time I remembered nothing after being pushed through the double doors in the wheel chair I had borrowed from the hospital. Since then a bit more has come back. They took some blood to send to the lab and a nice Doctor gave me a shot to make me more comfortable. He was prepping me for a MRI.
That was the remains of Sept. 30th / Oct 1st, 2003 in the late night/early morning. My next memory is about November 7th Or 8th. I lost a little over five weeks. At first I had not been expected to survive. I was in almost total organ failure from the toxins that were going into my blood from the gangrene left where the bacteria had been eating me. The toxins had taken hold and I was in a coma.
My brother had come out from back east and had almost everything in my house packed up when they said my chances for survival were looking better, but they'd probably have to remove my right leg above the hip. I lucked out again and the drugs got the better of the bacteria that was eating me and I kept the leg, or at least the better part of it.
I finally came to in the early part of the second week of November. I still thought it was the first of October. My memory kicks in when I was laying the bed, without a clue as to how I got there, wondering what the deal was and why I felt so strange and out of it. I remember a team of doctors in their scrubs and white coats came into my room. Four or five of them. I also remember thinking to myself, "This can’t be good, there’s a lot of them. How much serious doo-doo am I in? Do they know I can’t pay them???"
Their leader, Dr. John Maa explained I had a problem with my intestines called diverticulitis. I had heard of this but hadn’t a clue what it was. He went on to tell me they had removed about 18" of my colon, and given me a temporary colonostomy. I was full of morphine, confused and trying to look like I had my stuff together so I played along like I was up to speed. He went on to explain that through a small tear in my intestine some bacteria had gotten loose and eaten its way out to my right hip and down my leg. They had performed a series of six radical debridement procedures to remove the dead flesh. I was fine with this. (I had not yet seem the wound) I was very weak and tired and stoned to the gills of opiates. They may have left and come back later, this is still not clear in my mind. I remember Dr. Maa again standing by the side of my bed. At this point the seriousness of everything had hit me. I asked him the obvious question, "Why me?" and he replied "Incredibly bad luck." I will never forget the look on his face when he said that. It was of profound sadness. He asked me if I had any other questions and I remember well looking him in the eye and asking him "Doc, if I was in a coma for my 52nd birthday, does it count?" I guess he wasn’t ready for that and it was one of the only times I ever heard him laugh out loud. Incidentally, he assured me that it did not count, so any other survivors who were in the toxic coma for a birthday can take advantage of his expertise. He graduated from Harvard Med., and that’s good enough for me !
It was not long after that I found what he had been speaking of. A plastic bag was attached to my left abdomen that was filled with excrement. About a third of my right leg was missing from the top of my hip down to my knee. All of my other muscles had atrophied. I could not stand, walk, feed myself and was pretty much dependent on the staff for everything. I was down to about 135 pounds. I had weighed in at 178 before getting sick. During the two years before getting sick I had been dieting, successfully taking my weight down from about 325 pounds. My first real belly laughter came when the doctors told me I had to put weight on. Not to worry about cholesterol or anything else, but to just gain weight. They had a hard time believing that bag of bones had been a very large tubby.
From reading a lot of other accounts of surviving NF on this site I have learned I was incredibly lucky. I was still alive and kept the leg. I was really lucky that they quickly diagnosed me correctly, as I was almost too far gone when I got to them. Dr. Maa told me that maybe eight hours more delay going to the hospital and I would have been a goner. San Mateo Medical Center had "successful" previous experience with NF.
Now the "fun" part began. Looking back I'm not sure which scared me more, Necrotizing Fasciitis or the physical therapy I went through during the first stages of my recovery. By the time I came back (somewhat) into the world of the living I was unable to walk, sit up, dress myself, wash myself and had undergone a colonostomy and was urinating into a catheter. I couldn't even feed myself at first and it was over a month before I could clip my own fingernails. I had given up on life, but the hospital staff had not given up on me.
The first physical therapist I encountered was while I was still in the recovery unit. He had infinite patience and in spite of my steadfast refusal to even try to get out of bed he kept returning once or twice every day. I had such a scare the first time he got me to try standing, (I could not) that I was ready to live out my life in the hospital bed. It finally seemed the only way to get him to leave me alone was to try again, so hoping it would get rid of him once and for all I agreed to try. He put a large canvas belt around my waist and held on to me while I fought to stand. I was gripping my walker with white knuckles, and barely stood for three seconds before I was unable to keep it up any longer. The next day he was right back there, and wouldn't take no for an answer. Once more just to get rid of the guy I agreed to try again, and this time I managed to stand for about 10 seconds. The next day, to my complete horror he insisted I try walking a step or two. I know not the words to describe my fear, as I knew deep inside I would never walk again and did not want it proven to me. Unbelievably I took two steps before my legs and arms gave out and he helped me back to bed. Every day after that we walked just a little bit further, until I made it to the door to my room. To my complete horror he wanted me to walk through the door into the hall. To my amazement I made it and was beaming with pride as I passed the nurses station while they cheered me on.
I was soon relocated to the long term care ward, for a more complete recovery. The physical therapist was, as far as I was concerned a demon sent from hell to taunt me. She always showed up right after meals and demanded I do impossible feats. She made me walk distances so far I knew I'd never make it back to the sanctuary of my bed, while gripping me with another canvas belt. I was just coming around to thinking she wasn't so bad, and walking with a white knuckled grip on my walker when she did the unforgivable. She took away my walker and announced it was time to learn how to walk with a cane. Let me tell you, I wanted to beat her to death with that cane and might have tried had I not needed it so desperately for support. The demon from hell wouldn't give me an inch, though she was very patient and allowed me to stop and rest when I became tired. Rest before resuming my endeavor, mind you, not go back to bed. Just as I was getting good with the cane she pulled out her most heinous demand. I had to learn how to walk up and down stairs, and without my cane. White knuckles with both hands gripping the handrail I made it up half a flight and back down. Then the damnedest thing happened. I started to practice on my own. I saw an upside to the madness. If I learned everything they threw my way I might be able to get out of the hospital some day. I walked further every day, and also kept going back to the stairs trying for four more steps every day until I could walk up and down several flights without a death grip on the hand rail. They told me they almost never saw anyone so determined to rehabilitate themselves, but by the start of my third month in the hospital I saw it as my only hope for eventual release. I was an exercising fanatic, always trying to go just a little bit further each new day. I wanted my self reliance and dignity back. There was no stopping me from that point on.
Before I left the hospital I sought out the wonderful people who put up with me and forced me to learn how to become independent again and thanked them all profusely. Maybe they weren't sent from hell to torture me after all, heh-he-he.
The one guy I couldn't find was the original physical therapist, William who had started me on my road to recovery. It was almost two months later when I finally tracked him down. He recognized me immediately and I will never forget the enormous smile that quickly spread over his face as he saw me confidently walking forward to shake his hand. He beamed at me and asked me to perform several movements with my right leg to see just what abilities I had recovered. He was just amazed how much more movement than anyone originally expected that I had recovered.
Last May I went back into the hospital for a week and they reversed my colonostomy. I had a couple more visits to the clinic with Dr. Maa. In June he said to me, "Mr. Bolton. I hope you won’t be offended by this but it is time for us to end the relationship." To his surprise I broke out in a smile and replied "Doc, I hope you won’t be offended by this but I have been waiting for a very long time to hear you say that." This was the second time I remember him breaking out in laughter. It was then that he really leveled with me about when he had first encountered me. He told me that when they got back the results of the blood work and the MRI, that the rest of the team all agreed that it would be better to just let me die. They thought that I would never survive what was necessary to beat the bacteria, I was in such a weakened state. It would be more humane to just keep me comfortable.
Thank God for confident young guys from Harvard Med. Let him die was not an option for Dr. John Maa. I was an incredible challenge of his abilities and he was up to the task. I do not know the words to express how much I love that guy ! ! !
It had been over eighteen months now. I still dress a small wound daily. What was almost a third of the leg is now about 3" high, 1" wide and about 1.5 inches deep. I look forward to the day that ABD pads, paper tape and wound gel are no longer a part of my life.
People are surprised to hear that I consider myself just about the of the luckiest sons-of-a bitch around. I Did not die and I kept the leg. I do not feel sorry for myself and I am enjoying my life even more than I did before NF. It does give one perspective.
If you or someone you love has had NF, or is fighting it right now and you want to talk, go ahead and email me.
Please note: The following linked images are very graphic and may be upsetting.
T. S. Bolton
San Francisco, CA USA
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April 21, 2005