Ventilator-Assisted Living©

Fall 2005, Vol. 19, No. 3

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His Choice: My Life

Deshae E. Lott, Bossier City, Louisiana (deshaelott@hotmail.com, www.deshae.net)

Granted, no single response to life with a ventilator can be universal. However, I’m glad I didn’t see “Million Dollar Baby” before I required mechanical ventilation. It would have been anything but inspiring. In fact, I’m glad that my specialists’ reading of pulmonary function tests, sleep studies and blood work made them believe my respiratory failure, if it were to come, would be many years down the road.

As much as we want our physicians to acknowledge our concerns, pinpoint their source and alleviate our distressing physical symptoms, I am alive today because of their diagnostic ignorance. Had they been more familiar with cases like mine, a variant form of limb girdle muscular dystrophy, and told me that in a few months I would need to use assisted ventilation fulltime, and had they been more informed about the transition to that particular lifestyle, I believe I would have written a living will with advanced directives that prohibited intubation.

If I had had time to consider the emotional, physical and financial burdens of vent life prior to my emergency intubation, I believe I would have allowed my body its natural death. It is, after all, the more practical option if one wants to avoid emotional, physical and financial burdens.

It takes guts to choose life with a ventilator. When my husband chose intubation for me, I was no longer conscious when the doctor reached the ICU and intubated me in time to avoid brain damage. Assisted ventilation and blood transfusions saved my life and allowed me to return to full consciousness. At that point, I had to decide about a tracheostomy and long-term ventilator use. (No other options were given, except for the unspoken one of death.)

My one question for the doctors, including the doctor overseeing ethics at the hospital, was whether I had the right at any time to change my mind after I agreed to try vent life.

photo of Jeffrey and DeshaeI learned that I did, and so I chose to work hard to rehabilitate as much as possible. Unlike “Million Dollar Baby” suggests, we do not have to ask someone else to commit murder or participate in euthanasia if we do find the lifestyle too hard to handle. We simply can exert our right to stop assisted ventilation, which will – for most of us full-time vent users – induce death fairly quickly.

Although the choice to live with a ventilator long-term has brought new limitations and routines and burdens and discomforts to our lives – of which we at times grow weary – I am grateful that my husband wanted me to live, no matter what. I am grateful that, with him, we create quality moments, both in our lives together and in my life independent of his. I am glad that we worked and continue to work at this. Each day proves all that much more precious, if all the more difficult.

If assisted ventilation is almost certainly an inescapable part of your future or that of someone for whom you care, I encourage trying a vent. If you have progressive disease, you can start with noninvasive ventilation to forestall respiratory failure and possible emergency tracheostomy.

Before you dismiss the option to continue living, give assisted ventilation a chance. No matter what complications vent life brings, you and your caregivers can create beauty and purpose in such living.

Deshae uses a Bivona TTS® cuffed trach tube (Portex, Inc.) and LTV® 950 ventilator (Pulmonetic Systems, Inc.). Previously she used a TBird® Legacy (VIASYS Healthcare). The cuff is inflated when Deshae is sleeping or when inhaling nebulized medications. When the cuff is deflated, Deshae can speak. When the cuff is inflated, she holds a noisemaker to alert someone if there is a problem.

Read the accompanying article ...
Her Life: My Caregiving by Jeffrey D. Sadow, Bossier City, Louisiana.

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