Scott and Medication

This is a letter I asked my mother Kim to write in response to a letter I received, in which I was asked for help and suggestions on helping people post-stroke to make improvements.

My husband Scott had a massive hemorrhagic stroke in the left occipital region of his brain, 12 cm X 12 cm, July 2010. He was in a non-medically induced coma for over two weeks, and doctors would not predict whether he would live until after he regained consciousness. In the four years previous to the stroke, Scott had undergone a failed ablation procedure with avoidable hospital error that resulted in thrombosis of the vena cava, a two week hospitalization and a six month recuperation. About two years later he was hospitalized for another ablation that resulted in pericarditis, seven minutes without brain or heart activity, and CPR that created acute respiratory distress syndrome and an 9 week hospital stay with a year of recuperation. At the end of that year, he suffered the stroke. He was left with anomial aphasia, visual deficits, and complete loss of the ability to read. (He can write from dictation but cannot read what he has written.)

Scott came home from the hospital with 10 prescription medications. We spent the first two months at 2 or 3 weekly sessions of rehab in which we mostly tried to assess his cognitive abilities but also worked on teaching him to cross the street. His therapist took him down a short hallway during every session and asked him to locate the bathroom, but time after time Scott was unable to do so. He could not tell the difference between the stove and the sink in the staff kitchen. After rehab benefits ended, we worked for three months on number and letter recognition, with Scott being completely unable to retain any recognition for more than two minutes. He could not tolerate listening to any music or recorded books. Then we started the process of daily living within the bounds of our new and unfamiliar circumstances.

After six months I began to wonder about the medications Scott was taking because we were not instructed to meet with any doctor to review which meds he needed and which he could stop taking. I began to realize that we were not being followed by any doctor, not under any doctorʼs supervision. We attended an independent seminar on traumatic brain injuries and heard a neurologist speak about specific medications that had long term side effects, and I presented him with Scottʼs meds list. He suggested that several might be interacting to create oversedation and recommended we find a doctor to supervise Scottʼs meds. I began to read about the meds and found one heart medicine he was on required a weekly blood test and was for short term use only, but Scott had been taking it for 13 weeks and we had never been advised of the need for lab tests. I phoned cardiology the next morning, and we were seen within the hour and left with an appointment to see the endocrinologist in the following hour. Over the course of the next 18 months we have taken Scott off five meds, three of which were useful during his hospital stay but unnecessary once he went home.

Scott is no longer oversedated. He must take an anti-seizure med twice a day to control the epilepsy that resulted from the stroke. We are told that is a permanent necesessity. He takes several other meds, but we have proven his need to take them by slowly reducing the dosage, under a doctorʼs supervision, till we could discern effectiveness. The result is he is more aware of reality, more involved in his surroundings, more responsive, and more able to do simple things on his own. He has been listening to music before falling asleep for several months. He has been walking our dogs by himself and chatting with neighbors. Today he began to tinker with an Apple iPod Nano on which is one audiobook and he enjoyed it very much. He cannot read letters or numbers, he cannot use a telephone or tell his address or remember his age, but he is starting to have a little more fun, and that is great!