Skip to main content

Vent or Not


25Went 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.

Labels

Labels:
Location: 2720 E Madison St, Seattle, WA 98112, USA

Comments

Post a Comment

Popular posts from this blog

Gratitude For Reading

People are reading my blog! I cannot express my gratitude enough. My heart is soaring! Before I got ALS, it was a minor interest amongst many varied interests. Today, I am unable to physically participate in many of my prior interests, like motorcycling, photography, knitting and other handicrafts, hiking, traveling, painting, drawing, going to the gym, working in the garden, doing housework, canning, and cooking gourmet or ethnic foods. Therefore, I am more focused on the ones that are most accessible to me, such as reading via audiobook or e-book, television, movies, meditation, music appreciation, and writing. Like the blind man who's sense of hearing and smell is heightened, I'd like to think my crippled body has made me more attuned to things more on the spiritual and sensual level. Initially, when some members of my family read my blog, they chose to focus on what they viewed as negative. The feedback I got was harsh and personally critical. .I was told that I was ...
4 comments
Read more

Prayer

Occasionally, we are seized with a rebellion so sickening that we simply won't pray. When these things happen we must not think too ill of ourselves. We should simply resume prayer as soon as we can, doing what we know to be good for us. -- TWELVE STEPS AND TWELVE TRADITIONS, page 105  Gee, I could have saved myself years of self-reproach by taking it easy on myself. "Try" as I might, I never could make prayer, in the traditional sense, a daily occurrence for stretches longer than a month. I had good intentions but inevitably, I'd be running late and forget. Or worse, I'd get a big, fat bout of attitude about not getting my wishes (the permanent position at the Gates Foundation, being fired from my last job when my health deteriorated, the cancellation of my Panama Canal cruise, and the various abandonments I experienced following my ALS diagnosis) and off I'd go, cursing my Higher Power, turning my back, isolating, and wishing I were dead (actually, I wa...
Post a Comment
Read more

I Remember...

I remember catching fireflies,  putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field.  That field was my...
3 comments
Read more