My caregiving journey - getting a diagnosis

My caregiving journey was long and complex. This describes what we went through, just to get a diagnosis.

My caregiving experience was long and very difficult. Debi and I met at university, and after our first date, she told me about her medical history. By the time we married in February 1993, she was already having some weakness and difficulty breathing. As she got sick, I chose to put her ahead of my career. I made the choices I believed, and still believe, to be the right decisions. But having the opportunity to make the choices still didn’t keep it from being difficult.

The First Ten Years

She had what was believed to be a major asthma attack during the summer of 1994. Just a little over one year after we were married, she had to go into the hospital. Because of her history of an unusual reaction to steroids, they had to treat her by an IV drip of gold. Gold is an anti-inflammatory agent.

In the fourth night she was feeling a little strange. She told me she was going to sleep and told me to go home and get some sleep too. A few hours later I was awakened by the telephone. It was Debi calling to let me know something had happened after I left. The nurses came in to give her medicine, but couldn’t wake her. They weren’t sure what had happened, but the doctor had come in and they were reviewing everything. She seemed to be fine now, but everyone thought I should know. We decided there was no need for me to rush back to the hospital, so I went back to sleep for a few hours.

The next morning the doctor confirmed that she had been in a coma the night before. He said it may have been a build up of the meds they had been giving her. But the good news was she was breathing normally again. Many years later we came to understand that she had been in a mitochondrial episode. Even though her breathing improved, she never returned to the level she had been few months earlier. She continued to feel significant fatigue.

Since she had a shortness of breath and cough, the doctors assumed she had asthma. However, this couldn’t account for the weakness she was having. Within a few years, she was diagnosed with a possible autoimmune disease, but they never could determine anything more specific. She never responded well to any of the treatments for asthma, inflammation, or autoimmune disorders.