Ventilator-Assisted Living©

Spring 2005, Vol. 19, No. 1

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Independent Living

Ines Gaudet, Rochester, Minnesota

Ines holding TuckerI am 48 and have used tracheostomy positive pressure ventilation since age 23. Currently I have a PLV®-102b volume ventilator at my bedside and an LTV® 950 on the back of my wheelchair. I usually have ventilator-free time for a four-hour stretch during the day and for two hours at night. I can often go a little longer without the ventilator if the need arises, but I find that the next day I may need to use it a little longer. Fatigue is a constant battle, and I have a lot of downtime each day.

I use a Bivona cuffed TTS™ (tight to the shaft) trach tube. Because of problems with frequent trach infections, I change my trach three times per week. I am suctioned a few times a day, but sometimes need to be suctioned up to as many as eight times a day. I have two suction machines, one of which is compact and portable.

My vocal cords are paralyzed, so I speak in a whisper. I have lived independently in an apartment in Rochester, Minnesota, since 1983, with the aid of personal care attendants (PCAs) who are with me 24/7 (paid through a state program). I have seven PCAs currently and one substitute. I use a local home health agency for my care, but write all my own ads for attendants and interview, hire, schedule and fire them.

The PLV®-102b and the LTV® 950 each have an internal battery that provides about 45-90 minutes of backup power. Each has external battery backup also, vital in power outages. I am still somewhat new to the LTV® 950, but love its size and portability. It’s especially useful on road trips. The local utility company keeps my name on a list of consumers on life support, and in case of an extended outage will notify me about how soon power will be restored.

I purposely left my diagnosis for last, because it’s not concrete. For the sake of labels and insurance forms, my internist writes a diagnosis of post-infectious encephalomyelitis. I had influenza at age 13 with subsequent seventh nerve palsy, some generalized weakness and weakness of my vocal cords.

At age 23, I developed an array of neurological problems (again after a bout with the flu) that ultimately became life-threatening, left me tetraplegic and unable to breathe on my own. I have weakness in all four extremities, but can walk a little. I use an electric wheelchair (Permobil) with a high back, reclining mechanism, ventilator tray and batteries.

Equipment:

PLV®-102b
Respironics, Inc.
800-345-6443, www.respironics.com

LTV® 950
Pulmonetic Systems, Inc.
866-752-1438, www.pulmonetic.com

Bivona TTS
Portex, Inc.
800-258-5361, www.portex.com

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