June 13, 2012
I haven't written for quite a while. My excuse is that I have been careening from one health issue to another and haven't had the strength to write. I have learned quite a lot from these illnesses. I am still struggling to reckon the past seven months.
In November I had a mild heart attack. I was at UCLA for an appointment with my neurologist, Dr. Elyse Singer. The trip to UCLA is always grueling for me. I can no longer drive so I have to rely on a disabled transit service. Since I am prone to profound weakness when stressed, I use a power wheel chair for the trip.
As is always done before seeing Dr. Singer, her nurse took my vitals -- temperature, pulse rate, oxygenation, and blood pressure. This time my blood pressure was 195 over 180, which is a dangerous level. Dr. Singer examined me and determined that I was having a heart attack. I was rushed to the Emergency Room where further tests were done that confirmed I was having a heart attack. I was given aspirin to treat the heart attack as well as some other drugs in an intravenous drip. The doctors told me after some imaging tests were done that I had calcium in my heart tissue and plaque in my cardiac arteries. The protease inhibitors I take for my HIV, the doctors told me, had likely caused my condition. I remember being pissed off that the AIDS meds had put me in this situation.
Over the next several hours with medication my blood pressure came down and the enzyme the heart produces during a heart attack disappeared from my blood.
I spent the night at UCLA in the observation unit attached to a monitor by probes pasted on my torso. The pain in my chest was bad so I asked a nurse for something to stop the pain and was told that because of the heart attack she could not give me anything for the pain; toward morning the pain subsided.
I could not sleep and channel surfed the time away. I became bored and started to play with the controls on my bed. Something I pushed caused the bed to start sounding "ping-pong-pang." Nothing I did stopped the noise. Finally, I buzzed the nurse to tell her my bed was making noise. She couldn't stop the noise and called maintenance. The maintenance man arrived a few hours later by which time I was going mad with the continuous "ping-pong-pang." The maintenance man couldn't fix it so after a conference between the nurse, the maintenance man, and the resident, it was determined my bed should be switched with one that wasn't making noise. The trouble was that all beds at UCLA were occupied so I would have to wait until a bed became available. Meanwhile, the bed continued to "ping-pong-pang." After several more hours, an orderly came to switch beds. He said, "Why hasn't anyone pushed the 'Call' button on the bed to stop the noise?" and then pushed said button whereupon the noise stopped, after six hours of "ping-pong-pang."
The cardiac specialist came soon after the noise fracas, and told me that my vitals had returned to normal, my heart attack had been caught in time and there was minimal damage to the heart tissue. She released me to go home with some prescriptions. I was a very lucky boy to have a heart attack while at UCLA. Anywhere else and the attack would have been more serious.
Just as I got home, the worst windstorm in 100 years hit the San Gabriel Valley, where I live. The winds rushed down from the mountains in swirling eddies that toppled trees, snapped electric lines and stripped all leaves from every tree and shrub. Oddly, not one of the leaves stripped from the trees and shrubs ended up in my yard. I think all those leaves piled up against the hills at the south end of the Valley. I never did hear who had to rake up all of them.
Of course, the power went out and the weather turned icy. I couldn't get my prescriptions filled as no pharmacy in the Valley had electricity. Luckily, my partner and I had learned our lessons from being in the Loma Prieta Earthquake in San Francisco in 1989 and had a portable generator at the ready. At least for a few hours each day, we could have heat and watch television. We have a gas fireplace in the lounge where we spent our daylight hours wrapped in blankets. We have a gas cooker so we could make meals for ourselves, even as the food in the fridge spoiled. We had just had groceries delivered and the fridge was full.
We lived this way for a week. We got out a few times to see the damage in the neighborhood and get burritos at a Mexican restaurant that stayed open during the crisis. The electricity finally came back on and life returned to normal.
I was once snowed in when we owned our hotel in Blue Ridge, Georgia. My partner, Jim, couldn't get to the hotel because of the snow and I spent my time with two elderly women who lived close by. We had one bottle of Scotch and several cords of wood to keep us warm. However, one of the women finished off the Scotch the first night, so the three of us spent the next four days huddled around a wood stove seething with resentment at the woman who drank all the Scotch. At least the restaurant where we were camped had a gas stove and the walk-in freezer was stocked. As bad as that was, I think the wind storm of 2011 topped it.
As it always does, life returned to normal. I began seeing a kindly cardiologist. My infectious disease specialist went on a five month trip to her clinic in Tanzania so I couldn't see her as I usually did. In February, I began to have severe headaches whose pain only responded to some Vicodins I had left over from a previous lumbar puncture. I told my cardiologist about the headaches and he gave me more Vicodin.
In early March while a nurse and social worker from AIDS Project Los Angeles were making their monthly visit, my partner, Jim, had a stroke. The nurse was wonderful and explained to the 911 operator my partner's symptoms. We had registered with Los Angeles County Emergency Services and the EMTs had our medical histories at the ready. Jim was rushed to the hospital. I got to ride in the front seat of the ambulance with the siren blasting.
At the hospital, Jim was put into a shared room. The other tenant was throwing up in a waste paper basket. After nearly an hour, he was taken to another part of the hospital, while Jim and I waited for the doctors to tell us what had happened. A neurologist gave Jim a bedside neurology test. I have taken enough of these tests to know what an abnormal test result is and could tell that Jim had damage to the right side of his brain. A CT scan was done which showed the damage was minimal. The brain is an amazing organ that can heal itself if given a chance and the doctors said Jim would be back to his old self in a few days.
I went home to rest. I woke up the next morning with a fever and the worst headache of my life. I have never been one to let a little illness stop me and I went on with my day. Jim came home the day after his stroke. We both spent the next few days in bed, Jim weak from his stroke and me with a fever of a 102, despite my usual bravado in the face of illness.
A psychologist comes to visit me every Tuesday at 8 a.m., courtesy of AIDS Project LA. I was very weak with fever, but we did our usual hour together. Peter, the psychologist, called Jim after our session to tell him that I seemed confused and disoriented. He thought I was having a crisis with my cognitive disorder and suggested that Jim call my psychiatrist. The psychiatrist was very concerned and called my IDS who had recently returned from her trip to Tanzania. My IDS, Dr. Shriner, upon hearing my symptoms arranged for an immediate trip to the emergency room. I thought I just had a fever probably caused by whatever bug the throwing up man had who shared Jim's room in the ER. I didn't feel I had anything serious.
At the ER, tests showed my kidneys, liver, lungs and heart were failing. My blood oxygenation was low and the doctors thought I may be having a recurrence of the PCP I had in 2004. I am allergic to Bactrim, which is usually used to treat PCP, so I was started on intravenous Dapsone. I had taken Dapsone for years after my bout with PCP. Almost immediately after the start of the Dapsone, my face turned beet red and splotches started to rise on my torso. My blood pressure and pulse began to drop. Somehow, I had developed an allergy to Dapsone. While the doctors were tugging their chins as to what to do, a nurse said, "Why don't we stop the Dapsone?" The doctors continued to tug their chins. The nurse said, "Fuck it!" and pulled the Dapsone whereupon the rash disappeared immediately. I passed out about this time and have no memories until I awoke a day later in the hospital.
When I awoke, the light in my room caused severe pain in my eyes and the lights had to be turned off and the shades pulled at the window. I had a catheter shoved up my penis. I had a shunt in my neck into which was pouring several bags of stuff. After several CTs, PETs, and blood tests I was found to have viral meningitis. One of the tests was a lumbar puncture which was botched by a neurologist I had dealt with years before when I first began to experience neuropathy and weakness in my legs. The puncture had to be redone the next day by a more competent doctor.
The tests showed that I had deficits on the right side of my brain and losses in long-term memory and learning ability. I developed a tremor that I have even now when I do fine motor functions like chopping vegetables or planting in my garden. After a week in the hospital I was released.
I was very weak after my release from the hospital. The least effort tired me out. Spring in my garden is a busy time and I tried to do the necessary work but found that after a half hour I was winded and tired. It has taken two months for me to gain back my strength. I am much better now.
So what have I learned? First, to be thankful that somehow the Universe saw to it that both Jim and I were surrounded by people who could help us when we needed it. Second, that Jim and I need the support that AIDS Project LA and my doctors give us. We are very lucky that a person who could help us was there when we needed her. Community is important. And third, to be grateful for every second of life we are given.
Due to my cognitive problems, I have trouble with compliance with medications regimen. I am working with my psychologist on this problem. My heart attack has made me suspicious of the meds since they were a contributing factor to my attack. I have developed an aversion to the meds because of the attack, which I am working through with my psychologist. I am concerned that I have developed an attachment to the serenity I feel when I am seriously ill.
This last issue arises from a childhood experience of "Oneness" I had that I have never been able to replicate with drugs, meditation, or religion. When I had PCP and had to concentrate on every breath, I came close to my childhood experience. The weakness of my latest serious illness cleared my mind and gave me a glimpse of that childhood experience. I am probably too fixated on this concern that I have begun to love being ill. But, who doesn't remember the comfort of a nurse visiting you in the lonely hours of the night? I may be silly, but there it is.
Life goes on. The lilies are blooming in my garden. I have seedlings ready to set out -- bedding dahlias, sun flowers and dill. The birds are tearing apart the coconut husks I have set out for them to build their nests. The fruit trees are setting fruit. I sit in my garden in the cool dusk and marvel at the beautiful complexity of nature.