Our Journey Through the U.S. Health Care System
the daunting and absurd undertaking to obtain health care for an artist
I have decided to share the diary entries I wrote during my husband’s illness in the hope that our journey can help others navigate their way. I started keeping a diary because the doctors would ask me a lot of detailed questions during appointments and I would not have remembered it all without these notes. Even though some of what happened could arguably be considered malpractice, I have changed the names of all doctors, hospital, and hospital personnel because I do not want retribution, only effective change to our healthcare system.
this is the second entry…
The results of the complete blood analysis, CT scan, and chest X-ray all came back normal. The doctor explained he had had a seizure but said he wasn’t able to pinpoint exactly why it had happened. He said he wanted to admit him to the hospital in order to monitor him for a few hours. He was sleeping due to a non-anxiety drug they had given him, so I agreed to have him admitted because I had to go teach a class at 9:30am and I didn’t want him to be home alone. He was taken upstairs to a room in the hospital around 7am. I went upstairs with him and then, left at about 7:30am to get ready for work.
After teaching, I went back home to get some things and realized our fitted sheet for our bed was missing. Apparently the paramedics had used it to get him onto the gurney but never gave it back. I called the ER room to see if it was still there, but the ER said that the ambulance unit had taken it and they didn’t have it, so we never got it back.
I realized that Craig had peed on our mattress, not uncommon during a grand mal seizure. I can’t believe what I did. By myself, I dragged the queen-size mattress outside onto a flat dolly over to the hose and sprayed it down with water, then pulled it back over into the sun to dry. I’ve heard that when trauma happens, adrenaline kicks in. Well, I was stronger than fuck. Then, I started calling his close friends to let them know what was happening. I was completely distraught and in shock, but not crying. It was surreal, just doing what needed to be done.
I arrived back at the hospital around 12:30pm. I was introduced to a doctor associate who was subbing for the doctor until he could arrive. She said she hadn’t heard the whole story and was glad to talk to me, but after reviewing his chart, she was convinced that the incident was due to sleep apnea. I told her I was absolutely certain it was not sleep apnea because my former husband had had sleep apnea and I was familiar with it. I told her Craig sleeps peacefully, doesn’t snore, and doesn’t have lapses of breathing.
A bit later, when the nurse came in, I asked her when he would be getting discharged and she said that there was no plan to discharge him and in fact, the doctor associate had ordered more tests and was planning on keeping him in the hospital. I told the nurse what the ER doctor and I had agreed upon in the morning: “only a few hours of monitoring” and she said to wait until the doctor arrived and discuss it with him. Dr. Montey finally arrived at 3:30pm and said all the tests were negative and they couldn’t determine what had happened. He said that he wasn’t a neurologist, and the next step would be to have a neurologist come and examine him and that he would most likely order more tests. Craig felt fine and was acting completely normal except the back pain.
We told the doctor he needed to see his chiropractor more than anyone else right now. We explained that he doesn’t have health insurance, no Social Security, not even Medicare. He said that he couldn’t sign off to let him go, but that he couldn’t keep us in the hospital either, if we wanted to leave. That’s the first time I had heard of AMA, leaving the hospital ‘against medical advice’. I asked him when the neurologist would be coming, and he said he didn’t know and that he would go find out and let us know. He never came back.
Craig and I were terrified of how much the hospital stay was going to cost. We had heard stories about patients losing their homes due to medical bills. The doctors said the seizure could have been a fluke accident and might never happen again. They couldn’t find anything wrong with him, so Craig and I finally decided to leave AMA. It was a scary decision to make.
At 4:30pm, the nurse came back with the release papers to sign, but before I signed them, she said,
“Oh, you know he has an urinary tract infection, right?”
I was astonished. I told her no, I didn’t know that. I asked her why Dr. Montey hadn’t mentioned this to us just a half-hour earlier. She said she didn’t know. He hadn’t said anything about an urinary tract infection. The nurse said that he was receiving an antibiotic through his IV at the moment for the infection. With that news, I was hesitant to sign the release paperwork. Did he really have an infection? I knew if I signed the release AMA, he wouldn’t have a prescription for the antibiotics at home if there was an infection. Just to make sure, I asked the nurse if we could get a prescription for the antibiotic from the doctor and she said she would ask and come back. As I had figured, she said they couldn’t write a prescription for us if we were going to leave AMA. She suggested I call his general physician. I called his general physician and they said we would have to come in for an appointment in order to get the antibiotic. But he can’t walk!
On our way out of the hospital, we were stopped by a social worker from the hospital who said he wanted to help Craig get health insurance. He told us what to do to get Medicaid. Getting affordable health care in the United States is not easy. The smorgasbord of health plans with various premiums, deductibles, co-pays, and caps in their fine print make it a confusing and daunting task. Absurd really.
We arrived home around 5pm. It was very difficult trying to get him into the house due to his back pain. He still couldn’t walk to the bathroom. I didn’t have another fitted sheet for our bed, so we slept on the mattress pad for two nights until I was able to go to the store.
Every time he tried to move, he would scream. He was using a urinal to pee. He tried to walk to the bathroom and his right leg gave out on him and he fell, bruising his right side and shoulder. I had to borrow a wheelchair from my neighbor in order to take him to his general physician for the antibiotic he supposedly needed. I couldn’t believe I was wheeling my rock of Gibraltar, my protector, by ‘big guy’, former football, baseball, tennis and basketball player in a wheelchair. After the chiropractic adjustment, he was feeling back to normal. It was as if nothing had happened.
I, on the other hand, was having anxiety attacks. The thought of Craig having a grand mal seizure again while we were driving, walking across the street, eating in a restaurant, wherever, scared me so much. My mind would suddenly think what if he has one right now! I would hyperventilate with sweaty palms, and start shivering.
to be continued…