The treatment plan lasted about 48 hours. My neurologist messaged me and expressed concern about my creatine phosphokinase (CPK) blood test result. CPK, also known as CK (creatine kinase), measures the level of muscle damage in the body, and my latest tests showed an unexpected significant increase. The disease progressed faster than expected, requiring an altered plan.
My neurologist added rituximab infusions. Rituximab, commonly used to treat some cancers and autoimmune diseases, suppresses the immune system and reduces inflammation. It added complexity to the plan though. It required careful coordination with my IVIG infusions and had to be done at the hospital infusion center. The infusion center had a long wait for an appointment, so my doctor again opted for the fast lane and admitted me to the hospital. Although I greatly appreciated having this option, I hated incurring its cost and still waited a month for the infusion.
Scheduling infusions were the least of my challenges. The doctor made it clear it would take time before I improved, but I never considered I would get worse so rapidly. Over the next six weeks I went from struggling to accomplish daily tasks to being unable to do them. I could no longer get out of a chair or walk upstairs without significant assistance; walking was a challenge, and physical therapy exercises I did in October were out of the question in November. I was limited to living on one floor and sleeping in a recliner.
My wife soon realized I could no longer be alone in the house. She was already taking intermittent leave from work to take me to medical appointments, but this was insufficient, and in-home care introduced a whole new set of challenges. What was the financial impact of my wife taking full-time leave? Was it feasible to expect she could deal with the physical demands of the assistance I required? Thankfully my son, who lives in the midwest, delivered. His employer allowed him to take partial family leave two days a week and work remotely three. He arrived in early November and spent two months providing the extra help when I needed it most.
The disease was also taking an emotional toll on me. I began to feel like it was winning and recovery might be out of reach. I was concerned by new symptoms that included generating large amounts of phlegm, trouble breathing and coughing fits. At the rate I was deteriorating, it did not seem possible I would survive long enough for the treatments to reverse this slide. I asked my neurologist “is there a point of no return?” She seemed taken aback by this question but assured me I would improve and there were other treatment options she could turn to if our plan was not sufficient. I had my doubts.
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