Went to the U Dub yesterday to see the pulmonologist. Been considering a tracheotomy and ventilator to give myself more time on the planet.
As you can imagine, the decision to be "trached and vented" is a major one. Will it hurt, is the least of my worries. I was told a few years ago how easy the PEG tube was supposed to be; finding the reality to be excruciating, when the male doctor placed it between my breasts. ALS is painful. Our reality is loss and pain (and medication).
Further loss of independence is a big consideration. My reality has me cared for by paid caregivers in a nursing home setting. I'm in a top notch facility but the nurses have not demonstrated proficiency operating the cough assist and suction machines, two machines essential to clearing secretions and preserving my life. And now I have to trust more unknown "professionals" on yet another machine in order to extend my life. .
Oh, and my current top notch nursing facility, does not accept patients on the ventilator thus I would have to leave. I don't want to leave. I've already toured those facilities offering ventilation care and found them lacking. First, they are located far from family and friends, isolating me from my reasons for living. Second, they're essentially old folks homes. My facility cares for HIV patients and other terminally-ill patients, and caters more to a vibrant, younger community. My life is enhanced and elevated here. Old folk's homes wreak of death, dying, and restraint. Third, these "vent homes" will force me to share a room. I cherish having my own space in this last slice of my life. I'm surrounded by my stuff, the last bit of my identity and independence.
It was good to meet with the pulmonologist, but it wasn't what I was led to believe. I expected to view an indepth video and discuss. What I got was an amazing opportunity to become reacquainted with the doctor who almost signed my death certificate last Christmas. Seriously.
I was brought in to the University of Washington Medical Center emergency room at my insistence when I quickly became unable to deal with my secretions. It did not help that the nurses at my previous nursing home never bothered to learn to use my cough assist and suction machines on me. I'd been laboring to breathe for some time when I felt I needed assistance. To my knowledge, they never found any vital statistic out of whack enough to send me out to a hospital on their own. However, the University of Washington found reason enough to admit me. Within hours, in the medical ICU, I struggled to clear and a small tube was thrust up my nose. Pain seared my consciousness, I refused the procedure, my husband dashed from the room, I fought with everything I had and lived to fight another day.
Later, I learned the doctor, this man, in particular, counseled my husband that he needed to prepare himself to lose me that night. I have to admit, though I lived it, I was shocked to learn how close to violent death I was. I was also unpleasantly surprised by my husband's final abandonment in my moments of need. These observations are beside the point; on the positive side, I was able to show this doctor that I was made of tougher stuff.
At this point in time, I agree with my pulmonologist, tracheotomy and ventilation do not make sense for me. I don't know that it will ever make sense for me. I would feel different if I were in my own home surrounded by my things and loved ones, positioned in my livingroom, watching my birdfeeder, waiting for a grandchild to be born.
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