A View from the Bed

Falling is bad. Only toddlers and the elderly fall, and I am neither. “Have you fallen?” is the most common question I am asked at medical appointments, including by almost everyone at my neurologist’s office. Falling means you can longer rely on your body to function as needed and it introduces the possibility of additional injuries like a concussion or broken bones. 

I fell twice the last week of November. Each time I focused on my damaged ego and gave no consideration to the fall’s true impact. The first fall seemed minor. I was confident my injuries were limited to a scuffed knee, but knew I needed help to get off the floor. My wife disagreed with my assessment however, and dialed 9-1-1 before I could explain what happened. 

After the firefighters got me off the floor there was a quick (and unfair) debate as to whether I should go to the hospital and before I knew it, I was in the back of an ambulance. The emergency room (ER) was hectic, but my visit was quick. Some x-rays, an assessment by a doctor, discharge, and on my way home within a few hours. I was right and my wife was unhappy.

The second fall was worse, and I downplayed it even more. I fell stepping into the shower. Nothing crushes your ego more than having your wife and kids standing over you on the shower floor in your birthday suit wondering how they are going to get you upright. My son seemed very concerned, my daughter found it funny, and my wife went into crisis mode. Days later I saw the humor in it, but in that moment, I was horrified.

9-1-1 was called, shower door removed, repeat performance by the firefighters, another quick (and unfair) debate and I was back in an ambulance. I hurt more this time but again, my injuries did not seem serious. The true impact however, was the realization my body could no longer hold itself up, and I could no longer care for myself. The ER doctor and I agreed to assess my injuries and transfer me to the hospital my neurologist was associated with as quickly as possible.

I was accepted as a neurology patient at the other hospital and transportation was arranged when I told someone I was having trouble breathing. Big mistake. I should have kept this to myself. The ER doctor ordered a chest x-ray, which revealed symptoms indicating I had perforated my bowel. I was confused as to how I could possibly have a perforated bowel. Although the feeding tube gave me stomach issues, nothing suggested I had a perforated bowel. The doctor did not have any answers for me, so he ordered a computed tomography (CT) scan which confirmed the symptoms. Instead of being transferred as a neurology patient I was transferred as an ER patient to be evaluated for surgery, and I could not help but feel my medical issues were swirling out of control and regaining my health just got much harder to achieve.

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.

I had been hospitalized for less than 24 hours, had not eaten in over 24 hours, and my breakfast had just arrived when I was whisked off for a “swallow study”. The staff watched an x-ray video while I swallowed various liquids, declared me NPO, and sent me on my way. It was not a “swallow study.” It was a swallow test and I flunked miserably.

Staff told me NPO means “nothing by mouth,” but no one could say what the initials NPO stood for. Google knew…“nils per os,” Latin for “nothing by mouth”.

I love food. I love to cook, eat, try new recipes, and watch food-related shows. I take joy in preparing a meal to share with family and friends. Taking away the pleasure of eating is cruel and at that moment, the worst news I could have heard. Who made this decision? What right do they have to eliminate this love from my life? Why did I tell anyone I was having difficulty swallowing?

When I returned to my room a neon pink sign with my name and NPO printed on it hung on the door (so much for HIPAA). My breakfast was gone, and I wondered how I would recover from the loss of my lifelong love.

The emotional pain of being NPO paled in comparison to the physical pain to come. Nourishment needed to come through a tube, and since the doctors thought my swallowing issues were temporary, they inserted a nasogastric (NG) tube. An NG tube is inserted through your nose and into your stomach. Despite what the doctors may say, the insertion process hurts a lot, first when the tube is inserted and again when they clip it in place. I am convinced that when the resident says you may experience “some discomfort” it really means “this is the first time I have done this and it is going to hurt like hell.”

Nourishment through the tube consisted of a brown liquid delivered via a pump from 4:00 PM to 4:00 AM. The pump’s alarms sound regularly and the “brown slush” (as I called it) gave me diarrhea and messed up my glucose levels. Despite the neon pink sign, I was constantly asked by staff if I wanted something to eat.

During my follow-up neurology appointment, my neurologist said the hospital doctors were too optimistic about my status and scheduled surgery to insert a percutaneous endoscopic gastronomy (PEG) tube. A PEG tube is surgically inserted through your abdomen into your stomach. More comfortable than an NG tube, and I looked better without a tube hanging from my nose but still requires nourishment delivered for 12 hours via a pump.

Ironically, my surgery fell on Halloween and I am still being fed through a tube.

The US healthcare system has two lanes for anyone with undiagnosed medical issues: slow and express. In the slow lane your primary care provider (PCP) assesses your symptoms and determines a course action. This may include blood tests, imaging, and specialist referrals. It makes sense in many cases but for me, was a failure.

My PCP initially ordered blood and urine tests, and made referrals for an endoscopy and echocardiogram. Then he referred me to a urologist, wrote a prescription for hyperthyroidism and set a follow-up appointment a month later. This is how the system works in the slow lane.

I feared they were missing the forest for the trees. Would investigating each symptom individually fail to recognize a single cause. I struggled to understand how my symptoms were related, but began to think they must be given their onset and worsening happened simultaneously. I worried the follow-up would not provide the answer.

This approach was tedious. I waited five weeks for the echocardiogram appointment, eight for my endoscopy and urology appointments. My symptoms worsened daily and it would be at least eight weeks before my PCP had information from these appointments.

Thankfully, at my follow-up appointment my PCP changed lanes. The significant worsening of my condition worried him. My wife and I were already prepared to discuss the need for a different approach as she, Google and I concluded I had an autoimmune disease.

My PCP recommended I go to the emergency room . . . the express lane. After 12 hours in the ER I was admitted to the hospital’s neurology floor. In those twelve hours I had three echocardiograms, one x-ray, two CT Scans, one sonogram, two urine tests, and 33 blood panels. Within the first three hours the ER team determined my symptoms were either caused by a serious cardiac issue or an autoimmune disease. A few hours later they ruled out the cardiac issue and focused on statin-induced necrotizing myositis.

I have no idea how long it would have taken me to get diagnosed if I had not changed lanes, but in hindsight, I am certain I would not have come this far in my recovery without it.

My world was abruptly and unexpectedly turned on its head during the fall of 2024 when I was diagnosed with statin induced necrotizing myositis, an autoimmune disease that results in proximal muscle weakness. For me the impact was severe weakness in my legs, arms and shoulders, and neck and throat. I knew nothing of the disease, but this diagnosis was better than my feared diagnosis of ALS, and with the diagnosis I could now focus on managing the disease and regaining my mobility. 

Unfortunately, this was easier said than done. Getting treatment was slow. The initial treatments did not have an immediate impact (as predicted by my neurologist), and the disease continued to aggressively attack my muscles. Between my diagnosis in early October and Thanksgiving weekend, I went from being self-sufficient to being completely immobile. In October I was struggling to go up stairs, get out of a chair and put on a shirt but I was walking and able to deal with my personal needs. By the first week in December I could not get out of a chair, walk or raise my hands above my shoulders.

This low point marked the start of my journey to regain my strength and mobility. A journey that started with a six day hospital stay, continued with an almost six week stay at a rehabilitation hospital, and continues with a four week stay at a skilled nursing facility. It is the second week of February and I have not been home since the day after Thanksgiving. At this point, I am not sure when I will get home and I am not even sure what success looks like.

My journey has included a wide spectrum of emotions. Challenges that have been terrifying, frustrating, demoralizing, infuriating, inspiring, successful, joyful, and funny. It has also included many sleepless nights spent reflecting on my experiences. Reliving them, reflecting on my successes and failures, and keeping my emotions in check. Making sure I did not let my failures deter me and I did not get overly confident in my successes. 

During these sleepless nights I also convinced myself that I needed to document my journey. Initially I felt this would be therapeutic and help me maintain a positive outlook as I encountered new challenges. I also thought there may be others facing similar challenges that might benefit from my perspective and there may be others who have an interest in reading about my recovery. 

So what follows is a blog that I am selfishly writing primarily for my benefit, but hope it provides some benefit to others. New entries will likely be slow to come as I am not a very good writer, I am still very focused on my therapy, and my ability to type up a document is still very limited.