Our Journey Through the U.S. Health Care System
the daunting and absurd undertaking to obtain health care for an artist
Still no return phone call from the neurologist assigned to Craig from the hospital stay and the mini-seizures are continuing. Sometimes he has a good day, maybe one or two—-other days, it’s several every hour. Meanwhile, I was working on getting his coverage with Medicaid straightened out. That turned out to be a gargantuan task. I spent many hours on the internet and phone. Finally, I was told the only way to take care of it was to go down to the office and wait—no appointments possible.
At the Medicaid office, I was so scared. What if they didn’t approve him? I saw the first bill for the one-day visit to the hospital and knew we were doomed if he wasn’t approved. After about an hour wait—miracle of miracles, I ended up meeting with a young woman who seemed overly sympathetic, for which of course, I was very grateful. After several minutes explaining the situation, she confided in me that she had had her first seizure a few months earlier. I couldn’t believe it! She also said that she was told by doctors to start seizure medication, but she went to get a second opinion in Mexico, and the doctor there told her it was from stress and she should start doing things like meditation, to slow down her brain. Of all the people I could have met that day, I got someone who really understood the situation. She made sure Craig got Medicaid effective immediately. I was able to call the hospital and doctors and let them know they could now start billing.
With the health insurance in place, I continued looking for a neurologist and also continued my research on epilepsy.
November is National Epilepsy Awareness Month
Epilepsy is the common name for the medical term seizures. It seems like it would be the other way around. Epilepsy seems more like a medical term. Based on my research, I narrowed down the type of seizures to simple partial seizures in the temporal lobe. In researching neurologists, I finally found this mysterious Dr. Y. and he had a local number at an office only ten minutes from our house! I called and got a receptionist who said she could see him this week. Hurray!
We went to his office in a seedy part of town. Forty years ago, this was an upscale neighborhood. I remembered my mom bringing me to shop at the Robinsons department store across the street. The store sat on a plinth with steps on all four sides. It was like entering the Capitol building in D.C. We entered wearing our best outfits: dresses, white gloves and hats. The department store is gone, in its place is advertised Mercado de pulgas. The office didn’t have air conditioning and it was a hot summer day in the Valley. Dr. Y’s sign was on a dirty plastic banner draped haphazardly across the front entrance. Hot air, gasoline, and dirt were blasting through the open door into the waiting room. Several very mentally ill patients are also waiting to see the doctor. If we hadn’t been so desperate, we would have left immediately. One twenty-something young man had two seizures and Craig also had one mini-seizure while we were waiting. It was very disturbing.
Finally, we were asked to enter an examining room. The two chairs were dirty with stained seat covers. The examining table paper had dirty spots all over it. We sat in the chairs. The doctor came in holding his prescription pad and pen in his hands and said,
“What can I do for you?”
Craig started explaining his story and I added information when he didn’t remember. Then the doctor interrupted us and asked again,
“What do you want?”
Craig and I looked at each other quizzically. He wasn’t interested in anything we had to say.
I said, “Well, you’re the expert, you tell us. We want the partial seizures to stop!”
He had his pen in hand poised, ready to write on his pad and said again,
“Yes, but what do you want?”
Exasperated, I opened up my research folder and pulled out the eight page list of various epilepsy drugs that I had studied. I pointed to the drug Lamotrigine. He said exuberantly,
‘Great!’, wrote the prescription and walked out, leaving us dumbfounded.
We immediately took the prescription to our pharmacist. She asked if the doctor had explained the side effects. “No”, we replied. She ushered us into a private alcove and explained that there was a possibility that Craig could get a deadly rash. We needed to check his entire body twice a day for any signs of a rash and to stop the medication immediately and call the doctor if a rash begins. In addition, she said he should start taking small doses at the beginning and slowly build up. I will always be eternally grateful to our pharmacist for explaining to us what the quack doctor did not. Craig started the medication on July 3 and the next day, July 4th (Happy Independence Day!), he was seizure free. I was right! I had prescribed the second medication that stopped the seizures!
Craig was pretty much seizure free for about eight months. Occasionally, he would have a cluster of mini-seizures for a day or two, but overall, we were optimistic. Then he started having difficulty breathing and four different times usually in the middle of the night, we went to this one hospital because the ER was never crowded and they gave him breathing treatments. Finally, they suggested he get admitted for tests and he agreed.
They diagnosed him with congestive heart failure. The grand mal seizures had damaged his heart. We were so scared. What is congestive heart failure?! It means you have a weak heart. What horrible terminology! I start reading about it and according to the research, there is no cure. You may slow the progression, but a weak heart cannot be reversed. Craig was in denial and determined to overcome it. I didn’t blame him. He had gone from completely healthy and zero medications to thirteen different pharmaceuticals! Three different drugs for hypertension, but none of them were lowering his blood pressure.
Next week: Health insurance assigns a cardiologist for office visits, but not hospital procedures!! And the barbaric thoracentesis procedure.
To be continued…