Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, May 30, 2012

Meanwhile Back At The VA Hospital

On Sunday ALSadvocacy joined a few hundred thousand Americans in honoring our veterans at the Indy 500.  There was a parade where every grandstand stood and clapped for the military marching around the track.  There was the playing of taps that reminds us of the sacrifice that so many have made.  There was the National Guard car that carried everyone's favorite sponsor.  This past weekend our nation swelled with pride and honor for those who served and continue to serve.

Meanwhile back at the VA hospital, the following happened (as posted by a veteran on his facebook wall):
Maybe it was the consult, but this clinic really didn’t do its homework on me before I arrived. My experience below…

My PEG experience at the Augusta, VA has been interesting. I needed a PEG feeding tube to help ward off respiratory infections when my ALS starts to cause problems swallowing. I was scheduled to receive a PEG when my lung capacity dropped below 40 percent in March 2012. My VA neurologist recommended I get one, and submitted it as an internal VA consult.

I received one call before receiving my appointment date and instructions in the mail. The call from the GI clinic asked how urgent the PEG requirement was. I told them I had ALS, explained my dropping lung capacity, and requested an early date. They cut me off before I could explain I was wheel chair bound or discuss the procedure. No pre-op appointment either.

On the day of, we arrived promptly at 9 AM. By 9:15 the staff had its first issue. How to move a 200 lbs invalid from power chair to stretcher? No plan and no equipment. It’s rectified by 9:45 after a 5-floor move, and I’m on the stretcher with an IV. Now I wait, wait and wait.

No pain meds since midnight. I wait, I wait, I wait. Hips, lower back and butt are throbbing, burning, and aching, and I wait. Hey, why not just leave me in my comfortable fully articulating power chair until the last minute? Why are you surprised my blood pressure is high? Did you read my file?

At 12:30 PM I tell the nurse, something’s got to change or they can yank the IV. Ten minutes later I’m swishing down some pain stuff in preparation for the insertion of a scope down my throat. Next thing I remember is waking up and being told they couldn’t do it because I was too restless under the local anesthesia. They want me to come back on Friday so they can do the surgery under general anesthesia.

This is an example of what happens when healthcare professionals don't understand ALS. Patient and caregiver time and precious vitality were wasted, pain was inflicted, and taxpayer resources were wasted. Studies have shown that patients who receive care from specialized, interdisciplinary clinics have better outcomes than others, yet our veterans, who have twice the likelihood to need ALS care than the rest of us, have a VA system that clearly failed to deliver that skilled, interdisciplinary expertise.

So we cheered and honored our military on Sunday and Monday, and then we let this happen. That's just wrong.  Talk's cheap. We need to do better for our veterans with ALS.

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