Our Journey Through the U.S. Health Care System
the daunting and absurd undertaking to obtain health care for an artist
the third entry…
Sometimes I would lie in bed shaking from fear. I had to talk myself down reminding myself that all was peaceful at the moment, stay in the present, perhaps the doctors were right and it was just a fluke, one-time brain misfire. I assured myself that I could handle the situation if it happened again. And I used deep breathing a lot.
About a month later, again on a Monday morning, same time, Craig had his second grand mal seizure. As we had agreed, I didn’t call 9-1-1 because the doctors had explained to us that seizures are not life-threatening in and of themselves. As before, he came out of it in exactly 10 minutes. Ten long minutes—most seizures last from three to five minutes. After it happened, we laid quietly in each other’s arms. Then suddenly, he went into another grand mal seizure around 7am. For the first time, I saw him go into it and it looked like a heart attack to me. My friend had described what it looked like when her husband had a massive heart attack and died in her arms. I thought I was losing him. So, I called 9-1-1 again. The guy on the phone said that I could have the paramedics come out to the house, but they wouldn’t have to take him to the hospital if it was only a seizure, so I agreed to that. When they got here, it was the same crew. As they walked towards the house, I heard them say,
“Oh, I remember this guy, former football player, he fought with us.”
I stopped them outside and sternly told them that they really screwed up his back last time and that they should be gentler this time, use his first name, be compassionate, and they were.
Almost identical to the first time, Craig was coming out of the seizure when they got there. He was still very disoriented, so they said they were required to take him to the hospital because they couldn’t leave him unless he was completely coherent. And they couldn’t wait around. Not exactly what the person on the 9-1-1 call had told me. I felt bad because Craig had asked me not to call 9-1-1 again. He didn’t want to be in the hospital, but they took him away. This time he stayed for two days in the same hospital and got all the tests done—MRI, EEG, a Cat scan of his brain, and multiple blood panels.
They couldn’t find anything wrong with him again except high blood pressure. At first, I was mad, I wanted them to find the problem and fix it, but the doctor said we should be happy they didn’t find anything. He said if they had found the reason, it would have been bad like brain cancer or a brain tumor. He said most of the time they don’t know why a person has seizures, but he remarked that it is uncommon for a senior person to suddenly start having seizures. This time, the diagnosis was epilepsy and he prescribed a seizure medication called Keppra along with other medications for hypertension. They also said they would have to notify the DMV he could no longer drive until he could prove he had been seizure-free for six months. At the pharmacy, I was shocked to learn it cost $300 for a month’s supply of Keppra. I had no choice but to charge it to my credit card. Craig came home on April 2, but he decided not to start taking the seizure medication because of the strong, potent side effects, and once you start on the medication, it is not recommended that you stop. Craig had always prided himself in being healthy and not taking any pills of any kind. So, he was very hesitant to start on any pharmaceuticals. Meanwhile, I started doing extensive research on epilepsy at the Epilepsy Foundation.
Monday, April 21 around 4am, another grand mal seizure. What is it about Monday mornings? This time I didn’t call 9-1-1 and I had to go to work and thankfully, he was fully conscious by the time I had to leave. He stayed in bed with his pee bottle and lots of water until I got home.
A musician friend of his had come down to visit on Sunday and he was staying with us, but he never knew about that seizure. Finally, on Wednesday April 23, two days before our 14th anniversary, Craig decided to start taking Keppra.
Thursday evening, April 30, 2014 — so far, no more grand mal seizures. He said he has felt several times the feeling of an ‘aura’, a light-headedness, spacey-ness that comes on, and has been able to control it with deep breathing and meditation so far.
Then the mini-seizures began. They were about 20 seconds long and only affected his ability to speak in comprehensible language. The words were clear but jumbled up and didn’t make any sense. We needed to make a decision about the San Diego County Fair battle of the bands and the outdoor concert we were booked to play. We were hoping the seizures would stop. We tried rehearsing, thinking maybe if Craig was doing what he did best, singing and playing guitar, he would not get them, but they didn’t stop even during rehearsals. How horribly ironic that this songwriter, poet, walking jukebox, one of the most talented musicians on this planet was having seizures that affect his speech. Finally, we couldn’t wait any longer so, I called the organizers to tell them we couldn’t do the gigs. It was a shattering disappointment for all of us. Billy took it the hardest, I think.
Sunday, May 11 – Mother’s Day, still no grand mal episodes however, he is complaining about his mood. He is sleeping a lot and his awareness has been somewhat dull. The last two days, he has not had a smile on his face at all, probably due to the Keppra medication. It takes several weeks for the drugs to really take effect. He is still not exercising at all. He has been moving a bit more around the house and yard. I’m scared and sad. These pharmaceuticals have such strong side effects, one of which is depression, possible suicidal thoughts. He says he isn’t suicidal but feels ‘foggy’.
The mini-seizures increased. At one point, he was having them every hour. Our appointment to see the new neurologist in July was over a month away. I called for an emergency appointment, but he was on vacation. The voice message at Dr. Y’s office said that Dr. A. was subbing for him and to call a number in Orange County. I called the number, but it didn’t even identify who I was calling. I left a detailed message and waited a week, but no return call.
to be continued…