Today is February 13, 2005: 5 Months after disaster

I have no idea what a "blog" is but the term pops up all over the net so here goes.

Today, I sold my last whitewater kayak. It broke my heart to do it, but I came to the realization that I really could not paddle anymore with only one leg. I would always be afraid of the balance of the boat, not to mention that remote possibility that I might miss my roll and end up swimming. I guess I could swim with only one leg, but just the thought scares me. It took me long enough to stand in a walker after the amputation.

Boredom and a idea from my brother gave me something to do when I finally returned from two months in Tampa General Hospital, a trauma center for ten counties in Florida. He suggested that I digitize all the family photographs and put them on a CD-R disc. I Started the project the beginning of December and I completed the family photo album just the other day...pictures going back into the late 1800's. There are a lot of pictures of me from infancy to recent times. I am drawn to them constantly, as if I am looking for something that I know is missing. The first thing I always notice is my legs...yep, there were two of them until the dark times, until I trusted Florida doctors and there "superior" knowledge...Yeah, right, they don't know about anything other than cuts and bruises. In retrospect, I cannot pronounce most of their names, and the other ones, I can't understand what they are saying. Most of them are so wrapped up in their own arrogance that it is impossible to deal with them. I think that it would be prudent not to mention names as my story unfolds, reasons that will become apparent as the story progresses to present day.

I guess it started at the end of January 2004. I was putting in a rock garden around the shed in my back yard. It was a warm day and I was in shorts. Actually, I was feeling pretty good overall. In November 2003, thank God, I had bailed out of an engagement to a woman who turned out to be a drunk and who had an 12 year old son with a penchant for sodomy on his younger brother and friends, but that is another story for another time. It is a story I probably will never tell in detail because it brings me too much pain.

Anyway, several days later I was down at USA Fitness, doing my usual workout. I was on the pec-deck and working about seventy pounds of plates. A woman across from me was "laboring" on the quad machine with ten pounds of plates. You could tell by looking at her that she was simply there because it was the stylish thing to do. He clothing belied her purpose. The gym is "in" even if you don't exercise much. All you have to do it drink the designer water and wear the right clothes. She seemed annoyed that I was sweating and grunting when doing my reps."Do you have to make those noises?" she asked. I ignored her and happened to look down at my feet as I completed my last rep and noticed that my right ankle was swollen. I didn't recall unjuring it, so I assumed I must have done it unknowingly. When I returned home, I examined it more closely. I could see four little blisters spaced equidistantly apart as if I had been bitten by something. I assumed something had nailed me while I was working in the yard by the shed. I put some neosporin on the blisters and then covered them with a bandaid. When I removed the bandaid the next day, the blisters had multiplied in a circular pattern around the original four. I went immediately to my family doctor and he identified it as a spider bite and began treating me with an antibiotic, Cipro.

Being a "Yankee" boy, I knew nothing of poisonous spiders, especially having been raised by the shore for my entire life. The only predator I knew of was the shark and I rarely swam because of them. Little did I know that I had encountered one of Florida's two poisonous spiders and that the consequences of that bite would be catastrophic beyond my ability to imagine in my worst nightmare.

Antibiotic after antibiotic was prescribed for me. Nothing seemed to work as my condition grew worse. My originally swollen right ankle had become my swollen right leg by the beginning of March 2004. My condition was growing worse by the day. My doctor had added diuretics to my drug regimen, but nothing seemed to halt this bloating. I was filling up with fluid, despite the diuretics. On a Friday night, after a visit to the doctor's office that afternoon, I noticed that the swelling had jumped from my right leg to my scrotum and gentitals. I actually felt like I was carrying "basketballs" down there. The skin on the shaft of my penis had become so filled with fluid that it stretched over the glans, as if I had not been circumcised.

I decided that I could not wait until Monday morning to see the doctor again so I drove down to the local emergency room for treatment. After a tentanus shot, I was attended by a doctor who was arrogant, and arrogant people always "turn me off." Without even touching me he diagnosed me as having cellulitis and gave me a prescription for Zithromax Z pack, completely ignoring the spider bite on my right lower leg. I left the ER, secure in the knowledge that I had a new anitbiotic and was sure it would work. Maybe I had lost faith in my family doctor...I don't know. But the ER doctor, despite his arrogance, did not seem concerned at all about the spider bite as the source of my problems so I was also unconcerned.

Initially, the Zithromax seemed to help a bit, but eventually it too failed to produce any viable results. Again, I returned to the same emergency room with the same complaint--but with a different doctor. They did a more extensive work-up and discovered that there was protein spilling in my urine. I was hospitalized that evening because of a "problem with my kidneys." No one had connected the dots with the spider bite. Of course, as I mentioned earlier, I did not connect the dots either, being a "yankee" boy and trained in a discipline other than medicine, I placed my faith in doctors and assumed that they knew what they were doing. Was I wrong!

I spent ten days in the local hospital. For four days, they pumped me full of IV antibiotics--something called Ancef. Anyway, it was there that I met a man who in retrospect was not only arrogant but also ignorant; yet he was a doctor! I remember the first time I met him. It was on Sunday; He came into my room and announced that he was "my" nephrologist and started to explain what a nephrologist was. I made the mistake of interrupting him to tell him that I knew what a nephrologist is. In an arrogant and condescending tone, he demanded to know how I knew this. I was shocked--almost into silence. I could feel my mouth hanging open as I "searched" for the answer. I finally replied, "I hold a Ph.D. in English and taught for thirty years. Why would I not know what a nephrologist is?"

By the time my stay in the hopital ended, I had had a kidney biopsy performed along with a 24 hour urine same ordered by "my" nephrologist. I could not get a follow-up appointment with this doctor until the end of April and another follow-up in June. He insisted that there was no connection between the spider bite and my kidney problem and that he had never heard of any bite affecting the kidneys. He also told me that the 24 hour urine sample had to be incorrect because it only showed 8 grams of protein spillage and that the test had to be repeated in his office. He even wrote a letter to my family doctor about the problem and the test results.

For some reason, I decided to get a copy of my records from the hospital. I was shocked when I discovered that the 24 urine test done while I was hospitalised was the same as the one done at the nephrologist's office. Additionally he told me that my AC1 glucose test was "very, very high" at 6.5. He did know that I knew that 6.5 is defined as "near normal glycemia." In essence he was playing it loose with these test results. I decided to fire him for these reasons and I told my family doctor why I did. By the time I had pieced together my suspicions about thir arrogant foreigner, it was June. Unfortunately, where I live there is only one other nephrologist close to my home. I decided to seek her out.

By the time I got an appointment with her, I felt pretty good. I had lost weight, the bite had healed completely, but blood tests indicated that I still had the kidney problem. She prescribed prednisone for my kidney problem, absolutely disregarding the spider bite that I had received. She told me to take 60 mg every day for a month and then off she went to her native land for a month's vacation. She told me not to abruptly stop taking the medication and that if I had any problems, I should come in to see her partner.

Within four days of beginning the prednisone, I knew I was in trouble. I became intolerant of warmth. I had a persistentent cramp in my right calf and the wound from the spider bite, which had healed, was now beginning to blister again and weep fluid. I did not know what was going on. I thought perhaps I was allergic to the prednisone. Still I trusted that the doctors' knew best. If only I had brought my ability to research to bear earlier, I might still have my leg. However, as I said, I trusted these doctors who were leading me blindly down a path to disaster.

One month before I lost my leg, things became really bad. I was visiting doctors regularly -- my family doctor and then the partner of my nephrologist regularly. Eventually, I noticed that my right calf was cold to the touch and that my toenails were blue, and the tips of my toes were burning. Again, I went to the local emergency room. I was examined by that same arrogant doctor who had diagnosed cellulitis. This time he said that he thought it was circulatory and he ordered a doppler scan on my lower right leg. Again, when the results came back I was pleased but troubled. I knew something was wrong, but he told me that there were no blockages and no clots--"nothing acute" and he sent me home with a prescription for pain medication. He had absolutely no interest in finding out why I was exhibiting these symptoms. A posteriori, months later I discovered that a doppler on a cold limb will give inaccurate results. How many times I asked myself since that fateful night if he knew this fact or he was just trying to get me out of the emergency room before his shift ended. I'll never know for sure. However, I do now know that if he had done one more test, an arteriogram, he would have found the blood clot that eventually cost me my leg.

Several days after I went to the emergency room, I again went to my nephrologist's partner, hoping that he would figure out what was going on. I told him about the ultrasound and the results, my symptoms, and the fact that the previously healed bite was open and weeping again. He prescribed quinine for the leg cramp and reduced the dose of prednisone to 40 mg a day. Back and forth I went, every other day to the doctor's, looking for some kind of answer to what was going on. This went on for several weeks. Night after night of sleeplessness was talking its toll on me. In desperation, I went again to the local emergency room once again. This time I had another "out of the blue" or more appropriately "dart-board" diagnosis. I was suffering from "diabetes insipidus." Again, I was given more pain killers, and a pair of TED hose. This doctor in the emergency room actually conferred with my nephrologist's partner. He increased the dose of predisone to 60 mg again. My descent to hell had begun; I had passed the "point of no return." Several days later, everything was becoming even worse with the increased prednisone. I called the hopital ER and spoke to the doctor who had treated me. He told me not to bother coming in because there was nothing further than he could do.

The day before Hurricane Charlie slammed ashore, I discovered that my nephrologist had returned from her foreign vacation. I called the office and said that it was an emergency and that I had to see her. I waited until all the other patients had been seen and then I saw her. Fluid had drenched my right sandle and had created a puddle in her waiting room. She immediately took me off the predinsone by giving me the step-down dosage and wrote a script for another medication. She never touched me or looked at my leg. All she did was write on a piece of paper in my folder.

The day after Charlie, I knew I was in deep trouble. I could not sleep. Puddles of water were all around my foot and in my bed. I had to do something. All the hospitals in my area were damaged. Then I remembered another little hospital not far from me and called them to inquire if they were open of business. They were!

By now, although I could still walk, my lower leg was not only cold but also numb. Despite this I managed to drive myself to their other emergency room. Because of the recent hurricane disaster, things there were chaotic. I was eventually admitted to the hospital around 3 AM Sunday morning.

One of the most frightening this about this period of time --this hospital stay--is that I have very little memory of it. I remember going to their emergency room, I remember being admitted, I remember a nephrologist who reminded me of Sigmund Freud. I vaguely remember and female Indian doctor whom I could not understand. I remember my family bringing in shorts for me to wear..I remember that they were old ones which were way to big for me; and I also remember the ambulance ride to Tampa General Hospital. Why are these memories so frightening? These are my total memories for a period of thirteen days and twelve nights at this hospital. Either I was in shock, delerious, or sedated; looking at that time period is like looking into a never-ending darkness, a void, a nothingness.

When I reached Tampa General Hospital it was early evening -- perhaps around 8:30PM. I was immediately transferred from the ambulance to a private room. The nurses performed the usual routines, blood pressure and the like. Then a short man dressed in faded green scrubs came into the room. Again, all this happened in a dream-like panorama as if my mind were taking snap-shots and blocking what happened between snapshots. The man in green scrubs told me that I had a blood clot in my lower right calf, that it had been there for some time and that the lower right leg was dead and must be amputated. I must have disagreed with him in disbelief, because I remember him saying that he could take me down to the morgue and show me dead bodies whose legs looked like mine. I remember being wheeled from the room and being taken to a blue and white surgery prep room. I cried and cried as they prepared me for the surgery that would end my life as I had known it.

I don't remember being wheeled into the operating room but I do remember feeling so alone, so vulnerable--like a little child lost in a strange place. When I awoke again I knew that my leg was gone. I vaguely saw a familiar face--my neice who lived closest to Tampa General had gone there to be with me, she was holding my hand like a little child's. I don't remember what she said, but I remember that she was there when I needed her. That is something that I will never forget. I drifted in and out of consciousness. Time had no meaning for me. I cried and cried, and doctors came and went; physical therapists came into the room with this obscene contraption and tried to make me grasp the handles and stand up by the side of my bed. I was terrified and could not do it.

I was quickly transferred to the Rehab Building. People came at me out of the distortion that I saw around me. Poof and they were there and then they vanished as quickly as if I were in some sort of bubble. The man with whom I shared my room was a Cajun and everyone called his Poppi; I remember a CPN who was Spanish; he was the only one who could understand another man in another room, yelling constantly in Puerto Rican. Funny, I thought Spanish was Spanish but I guess that is not the case. I was so embarassed. I had to have nurses take me into the bathroom and put me on the toilet. I remember sobbing from the toilet one day and embracing this big, heavy black nurse who picked me up like a feather. Over and over I sobbed, "Thank you. Thank you." I was indeed a little child again who could not do anything for himself. This though was not the end of it; doctors suddenly appeared and wanted to "cath" me every time that I urinated. Just the thought of someone pushing a tube into me terrified me and I refused, but they were relentless. Finally, in disgust, I told them to do whatever they wanted. Thus it began--"cath" after "cath" after "cath." I had planned to outfox them by not drinking anything. I reasoned that if nothing went into me, nothing would come out. Of course, I was wrong. They informed me that I was not drinking enough fluids. Eventually, I surrendered and they merrily "cath"ed me three or four times a day for almost two months.

I wasn't in Rehab very long when someone appeared to take me down to the main rehab center. My God, was I impressed....a room the size of a professional basketball court or bigger was their rehab center. mats were everywhere. People in wheelchairs were everywhere, young and old alike; illness does not discriminate. It affects little kids and seniors alike. I particularly felt pity for the young children who for one reason or another had injured themselves or who had been injured. There was a young lad, perhaps 11 or 12 years old, wearing some sort of cage to stabilize his neck. I guess it was a football injury. You never found out what any of their stories were. We all were just tormented souls swept up in the recovery process. My therapist, a young man, tried to get me to stand in a walker. He succeeded for one brief moment and then I collapsed back into the chair, terrified to stand on only one leg with what was left of my lower right leg twitching violently in spasm. After I stood, he returned me to my room where I waited for lunch. As I sat in my wheelchair by the door, a young man, a teenager, perhaps 15 years old was led by me. He was in the arms of a therapist, who was forcing him to move one leg after another in an attempt to walk. The lad, though having minimal success, kept trying. I found out much later that he lived near me and that he had been struck in the head by lightning as he helped his uncle repair a roof after Hurricane Charlie hit. He looked at me as he stumbled past and gave me a "thumbs -up." I replied with the same gesture, adding, "Never give in. Never Surrender!"

I was just settling into the routine of the Rehab center when the unexpected happened again. My original amputation had been BKA, a “below knee amputation.” One of the doctors noticed a large, black spot in an area below my knee. He called in another doctor to examine it; they appeared concerned. I heard the work “necrosis” and that did not sound good. From my training in Greek I knew that it had to do with something that is dead.

The next day, I had no therapy. A young doctor in residence whom I liked appeared and told me the news. The amputation had to be redone because of the necrosis below the knee. They would try to save the knee but they could not promise it. I signed the papers authorizing another amputation, this time perhaps two inches above the knee. Later that evening I found myself in the same blue and white room, as they prepared me for another operation. I cried like a baby, sobbing that I did not want to go through this again. The nurses tried to comfort me but to no avail. When I awoke again, I knew that the surgery was over. I was in the recovery room. I asked to sit up in the gurney and they cranked the back up for me. At first they only gave me fluids, and later I had something to eat. I was, in retrospect, amazed at how calm I was. The violent twitching of my “residual” limb below the the knee had stopped because it was no longer there!

I went from the recovery room to a private room for four days. The whole time for some reason, I slept sitting up with four pillows propped around my back in one corner of the bed. Why I did it I don’t know. Perhaps I felt less vulnerable, like a gunfighter sitting in the corner of a room… I don’t know. One thing I knew for sure was that the hospital was becoming my “comfort zone” and I did not like that. I cried at the least little thing. Anything set me off. All I had to do was remember the past and a wellspring of emotions immediately overcame me and I was sobbing and crying. Finally, I realized that I was falling apart emotionally. For the first time in my life, I asked for professional help, a psychiatrist, because I knew that I could not deal with the reality of what had and was happening to me.