March 27, 2012

Let me tell you what has happened to me. It was the worst time of my life.

I was in hospital five months from June 7, 2011, until November 16, 2011. I had seven spinal surgeries, one through my abdomen. A section of bone was taken from my right fibula, and along with a cadaver bone, was grafted into my spine. I have a lengthy metal rod, a plate, and various screws in my back, and my pelvis is attached to my spine by two large bolts. I will never be the same again.

The vast majority of the surgical work was necessary because I contracted a staph infection, MRSA, while in hospital. The infection rapidly devoured sections of my spinal bone the way dental caries eat away teeth. I will never be free of the MRSA but have been colonized for my lifetime.

I’ve been wanting to write a chronological account of my medical treatment since I came home from hospital. I guess until January I was simply too sick to do it. But then I couldn’t. Writing this story is very difficult for me. I try never to think about my time in hospital and I have recurring nightmares about it. But here goes.

I had serious back and leg pain since 1999, which I frequently reported to physicians. Invariably I was told that I was getting older and was developing arthritis. Once I was insistent and I saw an internist who stupidly tested for asthma and ordered an ultrasound of my stomach.

By June, 2011, the pain was debilitating. On the 7^th, I simply couldn’t walk so I took a taxi, with much help from the driver, to the closest hospital, a Catholic one. Once again I heard the nonsense about arthritis and my spine was injected with a long acting steroid pain reliever after which the doctor expected me to go home. But I still couldn’t walk.

I was admitted and stayed in that hospital for two weeks while absolutely nothing was done except to offer me morphine. Then the doctors on rotation changed, and the new one sent me for an MRI. It showed that I had scoliosis and my lumbar vertebrae were out of line and deteriorated. The new doctor then had me seen by a spinal surgeon at the large general hospital (I was taken there by hospital transport accompanied by a nurse).

I was favorably impressed by the surgeon who is personable has a good reputation. He showed me the MRI and explained what should be done, and he didn’t treat me like a dope. That was Tuesday. We arranged that I would be transferred to the larger hospital and that he would cancel scheduled surgery and repair my spine on Thursday. The next day, hospital transport moved me to his hospital.

The surgery (decompression, instrumentation, TLIFs) on June 23^rd went well. Within a day, I was up and around with the aid of a walker. The surgeon implanted a rod in my spine and used screws to line up the vertebrae. While I was there my roommate had a psychotic episode and had to be moved to a private room with a guard. I was sent home at the end of a week. The night before I left there the lower part of my incision began to bleed, but the nurses thought this was unimportant. The hospital discharged me.

As soon as I was home I became very sick. Even so I had to go by taxi every second day to a clinic so that the dressing could be changed. The incision did not close. Within a few days I became violently sick - so sick that I had to be taken to hospital by ambulance.

I spent twelve hours lying on a cot waiting for care. My back continued to bleed and weep sticky material. After a few hours, the cot and my blanket, as well as my clothes, were soaked. Nurses simply did not come near me. Finally a visitor, a woman who had brought in her father with a heart attack, took pity on me and removed the wet things and brought me a clean blanket and put another folded one under me. I wonder if she contracted staph from helping me, and I feel guilty about her.

Once again admitted to the large hospital, blood tests detected the MRSA staph infection. I was given two grams daily of intravenous vancomycin, an antibiotic. The surgeon told me that my back would be opened, debrided and washed out. A secondary surgeon was employed to do this.

I despised the second surgeon. He was supercilious, nasty, and downright rude. He refused to talk to me at all in the meanest manner. He did the first debriding surgery and then had a vacuum pump dressing put on the open twelve inch wound in my back. A nurse told me that following the bebriding the dura (spinal cord covering) was exposed. There was a noisy compressor under my bed and the hose to my back made it difficult to find a position in which I could sleep. Changing the vacuum dressing was very painful.

One night, just as I was drifting off to sleep, my heart suddenly went beserk. I rang for a nurse, who clocked my pulse at 210 before she gave up trying to count it. After about twenty minutes the problem stopped as abruptly as it started. I was given an ECG and an x-ray and, for a day, I was kept in the Step-Down ward where my vital signs could be monitored by machine. It hasn’t happened again.

A cardiologist was called in, and he ordered an echogram which showed that one of my heart valves is slow. He said it is not a serious problem and prescribed a beta blocker.

A PIC line was inserted in my right arm and inside and across my chest to just above my heart for efficient insertion of the antibiotic.

The secondary surgeon performed three debriding operations in three successive weeks. Then he disappeared without ever once even saying hello to me. Presumably I was cured, but I felt very sick. Physiotherapists began to tell me to walk the hallway with a walker. I couldn’t do it to their satisfaction, and they noted in my record that I was uncooperative, and finally they left me alone. The hospital said I could go home.

The day before I left, I was fitted with a portable intravenous pump so that I could continue the vancomycin at home through the PIC line. I was getting two one-gram doses per day, but I had to stay connected to the pump and wear it around my neck for 24 hours a day. What an albatross it was, and it made normal sleep impossible.

At home I did not prosper. The pain was awful. I couldn’t change position, I couldn’t sit, I couldn’t stand, I couldn’t sleep. But visiting nurses were coming to see me to check the pump and my incision, and they kept saying that I was doing well. At about a week, my legs began to swell horribly, feet, ankles, thighs. Lasix did not remedy the swelling.

After ten days or two weeks at home I could no longer function. A visiting nurse became afraid of blood clots in my swollen legs and sent me back to the hospital. An ultrasound showed no clots. The spinal resident declared that I wasn’t suffering from a spinal problem and she left.

But then I was fortunate in the person of a physician, a hospitalist who used to be a surgeon, who admitted me to a general ward. After a few days I was moved to a private room. The hospitalist ordered a CT scan which showed two large holes in my sacrum, holes around the screws which had been inserted, and that two screws had fallen out and were loose in my back. Despite the intravenous antibiotic, the staph infection which I caught in either of the two hospitals was eating my spine.

I was given a private room (I am infectious, remember) in the spinal unit and the primary surgeon, the first one, resumed my care. He said that the metal in my back could not be disinfected and that it would all have to be removed. I remarked that I would be like an amoeba, and in retrospect that was apt.

So for a fifth time I was taken to the operating room, and all the hardware was removed. Back in my room, I was put on bed rest and was not allowed to raise my head more than 30 degrees. I stayed that way for four weeks. Imagine what it was like. During those weeks, the intravenous antibiotic was continued.

I have no idea why a period of four weeks was necessary. During that time I asked the department’s client liaison person for a medical consultation. He told me that the hospital’s half dozen spinal surgeons conferred weekly and that all agreed with my treatment and therefore a consultation would be unnecessary and useless.

Finally at the beginning of October the last two surgeries were performed over two days. The doctors thought that I couldn’t tolerate one marathon operation. On Monday, a section of bone was removed from my leg. Then an eleven inch incision was opened in my abdomen to give access to my lower spine. I think the two bone grafts (one mine, the other from a cadaver) were inserted that day.

I was kept under anesthesia, on a breathing machine, for two and a half days, until after the second surgery. The surgeon said I was being stabilized overnight.

On the Tuesday, the surgeon opened the incision in my back for the sixth time and inserted a rod, a number of screws, a plate over one of the grafts, and two long bolts which connect my pelvis to my spine.

I was unconscious until Wednesday evening. The department fellow, sort of a junior staff surgeon who is chief resident, woke me and told me that the surgeries were over. I had never been so sick and miserable before in my life. He said, “I’ll be back in a little while to have you sit on the edge of the bed and to give you a drink of ginger ale”, in his Aussie accent. He never came back, although in my ghastly state I repeatedly called him. It soon became apparent to me that either thing suggested by him was impossible anyway.

This part is extremely difficult to think of and to write about, and it is usually the crux of my nightmares. There was a feeding tube inserted through my nose and down my throat and an oxygen clip on my nose. There was a Frankenstein bolt in my neck with intravenous tubes connected to a machine. There were electrodes on my chest and an blood oxygen clip on my finger, and of course a Foley catheter. There seemed to be dozens of tubes and wires coming out of me. My throat, mouth, teeth, soft palate and hard palate were all dry, hard, and encrusted which made me nauseated. It was several days before I was allowed to have a sip of water, and five days before my mouth felt normal and I stopped retching in disgust.

But the very worst of all, my hands were tied to the sides of the bed and I couldn’t move. This great indignity was truly torture, and in my subsequent nightmares my hands are always tied. Sick, helpless, restrained, in pain, and lied to - I resolved that I would get out of Step-Down as quickly as possible, but it took about a week to be transferred back to the spinal ward. Don’t ever let any family member of yours be tied down, and if s/he needs a feeding tube be sure it is directly into the stomach and not through the nose.

Physiotherapists started working with me in Step-Down, first with breathing exercises to clear my lungs. Then to sit up, and then to transfer to a chair. It was difficult but I always tried my best.

During this time and the following four weeks that I remained in that hospital, my physical condition was dreadful. I had lost every ounce of muscle and fat that had been on my body. I was just loose skin on top of bone and my face was skeletal. When I am forced to think about what was done to me I almost wonder what kept me alive. But I know that I was saved by my ability to meditate anywhere at anytime. As well, I had an e-book until the last month when a nurse dropped it and broke it. For most of the time I had television, but I really didn’t want to watch it.

Another four weeks were spent in bed after the last two surgeries. Eventually I could totter about the corridor with a walker. Physiotherapists were much nicer to me during this period. I have to insert here that I was never rude or sharp or frozen-faced with any hospital staff. I smiled at everyone, even the cleaners, and I spoke pleasantly to all. The only exception was the one time I snapped at a male resident who continually wanted my bladder retention measured and tubes inserted. Most of the nurses were perfunctory, some were very nice, and a few were sadists who hurt me unnecessarily.

My sinus allergies were bad in hospital, and I was given Benedryl. But then after the last surgery, doctors refused to let me have it or any other antihistamine or decongestant. However I was constantly offered morphine. I took very small doses of pain medication, and tried to accept none at all. After surgeries the self-administered morphine pump was taken away because I didn’t use it enough. Since I’ve been home, I’ve taken absolutely no pain medication of any kind.

At the beginning of November I wanted to go home. However the surgeon convinced me to transfer to the university hospital for transitional care. I thought they would do rehab work with me, but there wasn’t much going on there except an exercise class each morning. But the dietitian came to visit the first day, checked sometimes to see if I had eaten, and had tremendous amounts of food sent to me. It worked, and I did get back my appetite. The only unpleasant note there was a male nurse who made me uncomfortable by being too friendly and bothering me.

But that university hospital only kept me ten days until November 16^th. On that day, they stopped the vancomycin antibiotic, removed the PIC intravenous line from my chest, and sent me home. I was so pleased to be away from hospitals.

In December I had appointments with the surgeon and an infectious diseases doctor. Both were surprised that the university hospital had sent me home without antibiotics. The surgeon said that the doctors there are unconcerned because “they don’t have to deal with the aftermath“. He stated that he is out of surgical options if the MRSA does any more damage to my spine. I now take orally 640 mg. of Sulfameth/Trimeth DS (it’s a sulfa antibiotic combination) every day.

I had further appointments with the two physicians in March and I will continue to see them every three months, with monthly blood tests. Each time I have a full spine x-ray, and in February I had a CT scan which showed healing underway. At our March meeting the surgeon told me I can drive, and I put my car back on the road on St. Patrick’s Day.

So what now?

I’m eating well. I’ve gained weight and I’m still adding pounds. My diet is heavy in protein (goodbye vegetarianism) and calcium and I take a multi-vitamin and an extra 1000 iu of vitamin D. I’m never going to count calories again. All I want is to be fat and fine. I recently saw a photo of me taken at Christmas - bony face, wrists, and chest and generally I looked sickly and sunken.

The surgeon prefers that I remain on antibiotics for the rest of my life. The infectious diseases physician isn’t sure that will be necessary after a year, certainly then the dose could be lowered. I want to take the pills forever. I’ve had enough hospitals, and I don’t relish spending my old age in a wheelchair in a nursing home.

Last month I saw a news article about Eastern Canadian researchers developing a drug which actually killed MRSA in mice. Even if that is true, it would take many years to get the drug on the market. I’m resigned to having the disease for the rest of my life. I’m probably not contagious while on antibiotics, but the bacteria are lurking in my bones. Once infected, a person is colonized forever. And I caught it in a hospital.

I generally feel sick. As well, the combination of beta blocker (Mylan-Atenolol) and lasix keeps my blood pressure too low for me to be truly energetic. The hospitalist who admitted me last August thought the swelling in my legs was caused by my heart. I now have swollen feet only but I still prefer to take the lasix.

My back hurts of course. The surgeon said it will take eighteen months from the last surgery to find out what symptoms are permanent. I can’t sit or stand comfortably for very long. And I don’t yet have much stamina. I saw a physiotherapist at home during December and I still do all the exercises on my own. When the weather is better I can get outside more and walk. I pay someone to do my house cleaning, and until this week I ordered all my groceries by phone once a week. I really look forward to poking around in supermarkets.

I have large patches of skin with no feeling; my lower back, my abdomen, the entire front of my right thigh. But worst of all, I can’t feel my toes which impairs my balance. The right toes especially just aren’t there. I’m okay at home, but when I go out I have to use a walker because I’m afraid that I will overbalance and fall over. I’m working on it, though, and I am determined to get rid of the walker in the next year.

My cats are fine. A kind neighbor took care of them all the time I was in hospitals. I missed them greatly though.

So that’s the story. It was difficult to write. I don’t know if I remembered all the important events. Just thinking about those days in the hospital brings a feeling of horror down on me. I probably will have the nightmare again tonight.