Hospital Admission: A Moveable Date

I found out last Thursday that my inpatient date, the date I’m admitted to the hospital for three to six weeks for my stem cell transplant, is moveable. I believed it to be a fixed point in time, I mean they mailed me a printed calendar with each day clearly mapped out after all.

Why did the date change?

The bottom line is that our hospitals are crowded and under staffed — not a great combination. With delayed care due to the pandemic and the simple need for excellent healthcare, access is an issue.

There are a limited number of beds on the bone marrow transplant floor and inpatient stays are mapped out for weeks if not months. I like to think of hospital beds like a math equation — everything has to add up perfectly, and many of the parts of the equation are wholly outside of your control as a patient.

Chronic not terminal

Apart from bed space being at a premium, I’m not terminal. When my transplant nurse and later my oncologist called to share this news with me, they were far more delicate and appropriate in their language. I was assured that I am just as important as all other patients, but my healthcare is less immediate. Despite my feelings of disappointment on a moveable admission date, I think I spent the majority of both calls assuring them I understood.

If pushing back my hospital stay means a patient with cancer has a chance at staying alive through a life-saving or sustaining treatment, TAKE MY BED. That is not me feeling less important or valued in our healthcare system, it’s the right thing to do.

Feelings are ok

I’m allowed to understand the “why” and still be disappointed. I’m a type A planner and I have been working towards this date — from FMLA and disability leave to packing. But none of those things matter in the grand scheme of things and are entirely flexible. My burden is administrative.

I find myself vacillating between relief to prolong what I know will be several weeks of arduous treatment and the frantic urge to begin in order to get it over with and start my road of recovery. And depending on the minute, I could go either way if asked.

Filling the time

My fatigue is at an all time high, even more so than regular MS fatigue, so I’m resting as often as I can. But my brain fog has lifted and I’m able to read actual books again which as you can imagine, fills me with so much joy.

With the nice weather, I’m trying to squeeze in as many outdoor meet ups with friends as I can. Savoring both human connection and the glorious outdoors, even if the outdoors tends to be the back deck of my house.

Lastly, I’m working with my physical therapist to build stamina and muscle memory in my damaged neuropathways. If you aren’t familiar with the word neuroplasticity, it’s the bread and butter of HOPE when it comes to MS. Neuroplasticity is the ability of the brain to form and reorganize synaptic connections, especially in response to learning or experience or following injury. The more you try, the harder your brain works to find a new pathway to get the job done so despite fatigue, it’s imperative that I keep at it.

So visits from friends, PT, rest and as you can imagine, all the books, will fill the gap and quiet my mind as I patiently wait for a new admission date.

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