After I was finally discharged, I had to give up driving my car because I was hitting things. I could no longer stand up long enough to wait for a taxi, so Dr. Ghaly ordered a wheelchair and I began to travel in medical transport vans. Dr. Ghaly also ordered home health aides for two hours every day.
I was now a wholly owned subsidiary of the State: SSI/SSD, Medicare, Medicaid, HUD Section 8. Hereafter, I could have all the medical care I wanted, but I could never again take my friends and myself out to church, dinner or a movie. No more mall shopping—I was no longer a valid American.
At an increasingly rapid rate, drugs were making me sick. The side effects were often bizarre and unpredictable but they always came, sometimes after three days, sometimes not for six months. I got on a first-name basis with my pharmacists and discovered that they had little regard for physicians and could be very helpful in explaining what was going on. Routinely, I would request the “manufacturer’s insert” when I picked up a new prescription. Somewhere on the insert, the side effects I was having would be listed.
By now, I was having so many reactions to drugs that Dr. Ghaly prescribed them at half the usual starting dose. The endocrinologist wanted to put me on Inderal because the existing treatment for the kidney disease had become increasingly ineffective. I told her about the drug problems and asked her to start me on a half-dose as did Dr. Ghaly. A few days later, I was devastatingly ill and had to go to the Emergency Room. They could find nothing wrong and sent me home. Two days later, same thing. A couple more days, and again to the ER. This time, the ER doctor told me to see my therapist—the problem was in my head.
Sitting outside the ER in my wheelchair, bitterly waiting for medical transport, I asked myself for the ten thousandth time what was wrong. This time, the answer came to me. I went home and checked the Physician’s Desk Reference (PDR). The endocrinologist had prescribed the Inderal at full strength and it was making me sick. Laying in the ER for eight hours waiting for the blood tests to come back was making me well: the half-life of the Inderal was expiring while I laid in the ER.
Shortly thereafter, I ended up on psychiatric inpatient again, ostensibly depressed but, in fact, too weak and exhausted to get out of bed. Dr. Ghaly ordered routine admitting blood work. My potassium level was substantially below normal. The endocrinologist who had over-prescribed the Inderal had failed to monitor the HCTZ she was prescribing.
Technical advances in the treatment of sleep apnea enabled me to tolerate the equipment, so I now slept with a machine attached to my face. Sometimes I was so fatigued that I couldn’t make it from the bedroom to the kitchen to get a drink, so a bedside refrigerator was ordered to keep me from dehydrating. I could no longer sit up in bed long enough to drink a bottle of water, so a hospital bed was ordered. Drinking water during the night would cause severe pain in my gut.
My body was no longer responding to the drugs prescribed to treat the nephrogenic diabetes insipidus. Normal twenty-four-hour urine output is less than two liters. With drugs, we had never been able to get mine below four liters. Now, despite the drugs, output was above six liters. Topamax was prescribed for depression, and urine output drastically increased. Withdrawal from the Topamax was severe. I hadn’t had an uninterrupted night’s sleep in more than a decade.
I took melatonin for the fibromyalgia. The pain and fatigue were unbearable, so the melatonin dose was doubled. I had acute menstrual bleeding that lasted for weeks. I was bleeding torrentially, passing blood clots the size of tangerines. The gynecologist scheduled me for a D&C. I ran out of melatonin and was too sick to get more. The bleeding diminished by half. I was admitted to hospital for the D&C. Despite repeated requests, the doctor refused to talk to me about the possibility that the bleeding was a side effect of the melatonin. He told me to have the surgery or leave the hospital against medical advice. With Craig Schaub at my side, I decided to leave the hospital. By the time three more days had passed, the bleeding had stopped completely.
Paul Cohen realized that my sleeping was worse. He got the pulmonary doctor to reset the CPAP (Continuous Positive Air Pressure) machine on an emergency basis while I was on my way to inpatient psychiatry again. The pulmonologist told me to have it re-titrated in the sleep lab. When he found out I was on inpatient psychiatry, he put a note in my file that I was not to be re-titrated. Months later, when I finally worked my way to another pulmonologist and another sleep lab, the results showed that my sleep apnea was now severe.
I got a new primary care physician, dehydrated again, and was admitted to medical inpatient to try to improve the kidney treatment. Motrin made me excruciatingly ill. The doctor continued to give me HCTZ, DDAVP and potassium supplements—the supplements now being twice what they had been when the disease was first treated. I had been having acute diarrhea three times every morning for about a year. The doctor insisted that I have a colonoscopy. “Up yours!” I thought, and refused. I watched as my roommate suffered through the clean-out that precedes a colonoscopy. (To be completed)