Patricia Hallenbeck

At the age of 43, in August of 1992, I was a very healthy man, never sick and had not seen a doctor in 25 years. One Sunday, my left elbow began to feel sore. I thought I must have strained it and thought little about it. The pain continued through Monday and Tuesday, annoying, but not so bad. Wednesday, I could see some redness and someone told me "that looks like an infection...you should see a doctor." So, reluctantly I decided to go to a local hospital the next day as I had no regular physician. Late on Wednesday night, the pain in my elbow began to skyrocket. It was a pain I had never known. As an self-reliant devout bachelor, I was used to shrugging off most problems. With each passing hour the pain increased. By about 5 am I knew something was dreadfully wrong, this pain had taken on a life all its own. In my case, I had no cuts, abrasions or injuries of any sort that might let infection in. Living in Los Angeles, I went to a large regional hospital and went to the emergency room at 7am. There were many patients, so I had to wait. Around 12 noon my arm began to swell. Within an hour, it was twice its normal size from my knuckles to my armpit. I saw a doctor about that same time. He was puzzled but admitted me to the hospital. My blood sugar was tested and it was over 800 and I was in ketoacidosis (diabetic coma). I was obviously diabetic, and treatment for that began. But the arm infection was still a puzzle. NO ONE THERE EVER THOUGHT OF NECRITIZING FASCIITIS. After 2 days of my condition getting worse by the hour, they gave up and transferred me to Los Angeles County University of Southern California Hospital, the largest hospital in Los Angeles and a teaching hospital. My pain had continued to be horrific (the pain felt like my arm was in a roaring fire burning) and they were giving me Tylenol for it (thanks a lot!!). I had also developed a large bullae (essentially a gigantic blister about 4x6 inches in size) on the inside of my left bicep. After being placed in a holding ward while they sorted us out, I started crashing. I literally felt myself begin to die, and I sensed this quite keenly. I finally got up, with my last bit of strength, and went into the hallway and shouted, holding up my arm, which by now had begun to drain fluids from the bullae, "Will someone PLEASE help me because I am GODDAMN DYING!!" The nurse's station was shocked, and a quick call was made. By the grace of God, the doctor who came down that night to see me, was the head of the Orthopedic School there. He looked me over and literally pulled my bed down the hall and got some help to get me to surgery as fast as humanly possible. IT WAS NOT UNTIL THIS TIME ANYONE SUSPECTED NF!! My situation now was this, I had runaway NF traveling up my arm, I was in deep toxic shock syndrome due to the bacterial toxins, my diabetes was out of control, my kidneys had shut down and I was in deep trouble. After some quick X-rays of my arm in the hall with a portable machine, I was in the operating room in less than 10 minutes. Bear in mind, I really had no idea what was wrong with me other than newly-diagnosed diabetes. After getting into the freezing cold operating room, the doctor sat down to tell me what I had. He told me I had Necrotizing Fasciitis--"Flesh-Eating Bacteria", and other complications. He summoned a nurse to tape record my authorization for surgery, there being no time for paperwork. He explained that I would almost certainly have my arm amputated, but, more importantly, if the NF had reached my neck...I would most likely die during surgery. For legal reasons, he stated his prognosis for my survival at 10 to 20%. He could guarantee nothing other than his heroic effort. I told him that I was in so much pain, I didn't care what happened. It's a funny feeling a minute of two before anesthesia when you realize that this might well be "the end". I only asked him..."where did you go to Medical School? He said 'Notre Dame'" I said..."Well I feel better now, you went to a good football school." Then he looked down at me, in the most sincere way I have ever seen, and said..."I will do my very best to save you life." I awoke in a desperately cold room (my reaction from anesthesia) and I was on a box-like table with sides on it, to prevent rolling out of it. I was still not sure whether I was in hospital or morgue. I fell asleep once more. When next I awoke, I was in a Intensive Care Unit, and absolutely delighted that I was alive. Still very drugged, I was semi-conscious. Someone came in and removed bandages from my arm (I now realized I still had it). When they pulled the bandages off, the pain I felt was the worst, by far, in my entire life. I screamed in pain, involuntarily. I finally was able to function and I saw my arm was covered with a green hospital cloth. I lifted it and looked...and I could not believe what I saw. My arm was cut open, very deeply, from knuckles to arpmit--on both sides. I thought..."MY GOD!! The forgot to SEW IT UP!!" Those of you who have had this accursed disease will understand that I now began the TRUE journey into real pain. Each day, groups of doctors would come to see me and take photographs (they had asked and I gave them permission to view my progress) as they changed bandages. The staff at this giant hospital were dazzled at what my doctor had done. He had opted to TRY and save my arm, rather than amputate, and he had succeeded in keeping me alive. The complication of the toxic shock and diabetes plus NF was supposed to be my death sentence. Twice daily, the long rolls of gauze were packing into, then pulled out of the open wounds as the bacteria was slowly killed completely. This was a ritual that tested my limits of endurance. I learned how much pain a person can take, which is remarkable. Now, be aware, this was just my left arm. On this website, you will see people who survived FAR WORSE situations than mine. I have read stories here (www.nfsuk.org.uk), and on the United States NF website, that demonstrate a breathtaking amount of courage. I was confined to a bed for almost 4 weeks before I could get up and walk, so devastating is this disease to your whole bodily system. My arm was finally sewn up (another extraordinarily painful event) after about 24 days, and a few days later a skin graft about 5x7 inches was put on my inside bicep where the bullae had formed and the infection was worst. After six weeks in hospital, I was able to be released. On my last day, as I prepared to leave the hospital--an entirely different person than the one who came in on a gurney weeks before--a nurse came in and told me I would be taking insulin the rest of my life and I could not leave until I could demonstrate that I could give myself an insulin injection. She thought the pain of the shot would be trying for me, and I had to prove myself. I laughed heartily and gave myself my first insulin injection...which with today's fine needle syringes is virtually pain-free. It took about 18 months to regain my arm movements fully. My story is one of those that is positive. Aside from an impressive array of scars and skin grafts, I am whole. I lost a great deal of my former strength, but I do alright. God grants his miracles, and I was one of them. There is no good reason, medically, why I am alive today. It's now been 11 years and 3 months since I met NF. I am beginning to develop complications from my diabetes but each day is profit for me. Some doctors believe the NF may have caused my diabetes, perhaps when my body's immune system fought desperately to kill the bacteria it may have destroyed my beta cells (the producers of insulin) as well. I fall into a category of "type 1-and 1/2 diabetes" because I have the symptoms of both Type 1 and Type 2. In the years since my bout with NF, I have tried to educate EVERYONE I know about this disease. Early detection is curable...a few short hours or days can end so many promising lives of so many beautiful and innocent people. This website (www.nfsuk.org.uk) is a tribute to a young man whose mother is striving, and SUCCEEDING in helping to save others. Imagine how proud he is of her! They say about 500 to 1,000 people in the United States get this disease each year out of 290 million population. It is rare. Don't waste time saying "why me"...spread the word. NO INFECTION of any kind can be treated lightly. DON'T say I will see the doctor tomorrow, GO TO AN EMERGENCY ROOM. If anyone wishes any correspondence, feel free to e-mail me.