ALS From Both Sides

Safe Harbor: Rediscovering Life; Going on a Vent

by Diane Huberty
2005, MDA ALS Newsletter

This month marks my first anniversary of life on a vent, life with a tracheostomy tube and mechanical ventilator. As I look back over this year and try to sum up my feelings, the words that come to my mind are "safe harbor". I have found a shelter, a place where I can literally and figuratively catch my breath, get my bearings, and even make some repairs to my storm-battered body.

The effects of the vent on my health, including oxygen levels that prevent headaches and give me energy, stamina, appetite, and pink cheeks, are equaled by improvements in my quality of life. My days are no longer dominated by shortness of breath, tiredness, and fear of the next episode of lung congestion.

My world has re-expanded along with my lungs. BiPAP (bi-level positive airway pressure, a non-invasive form of ventilation) was fine for relieving nighttime breathing problems, but as my daytime use of it increased, my world shrank. Even if the BiPAP machine had fit on my wheelchair, the mask and headgear were too bizarre-looking for me to want to go out. As a result I seldom went outside, much less left home.

Simply talking left me breathless, dizzy and worn out, making socializing too much work. I needed 10 or 12 hours of sleep a night and still was exhausted by bedtime. Now, with the vent, I am out for hours shopping, sitting outside chatting with neighbors, supervising outdoor projects, even accompanying my husband to his part-time job and staying up too late! The vent doesn't draw stares like the BiPAP.

People talk about the horror of being "tied to a machine" when they talk about vents, but they've got it all wrong. I already was tied to another machine, my wheelchair, and like the wheelchair, the vent has only increased my freedom, not tied me down. I actually feel rather proud to be seen out and about doing normal things. I feel I am representing the physically disabled and showing able people that, vent and all, we are still more like them than different.

Feeling Secure

Of all of the improvements the vent has made, the greatest is the feeling of safety it has given me. It sounds strange to say I feel safer with my life dependent on a hunk of -- egad! -- computer-run hardware and some batteries, but I do. It is far more dependable than my own body was and, unlike my body, comes with a backup unit!

The vent has alarms, something not all BiPAP machines have, which contribute to safety. There are no more horrible episodes of not being able to reach my call button when I can't breathe because of congestion or disconnected tubing. The vent alerts my family for me.

Life-threatening congestion is also a thing of the past. Relief is just a suction tube away! That little rattle in my chest that once heralded the onset of an exhausting and frightening hour of trying to cough out congestion is now just a signal that I need suctioning. Suctioning seemed like a big deal at first but quickly became fast and easy for my caregivers, a mere annoyance, not a medical event! Suctioning makes me cough hard so it probably looks like a miserable experience, but it is not at all. It is no more uncomfortable than any ordinary coughing spell and it leaves me rattle free. It is an incredible improvement over swigging expectorant cough medicine and then trying to hack up congestion using a cough-assist device or a series of Heimlich-like belly bruisers!

How does it feel to be on a vent? It doesn't! I am as unaware of my breathing as anyone else. No feeling of air being forced on me, no arguments with the vent over the rate and depth of my breathing. I just breathe! I expected a general ache or sore-throat feeling from the presence of the trach tube, but I am aware of it only if it gets tugged sideways or needs repositioning. At times the skin around the opening may get irritated, causing the only discomfort.

The Costs of a Vent

What does it cost to be on a vent? Thanks to Medicare Part B, the cost is manageable. My vent costs include vent, nebulizer (to deliver medicine if I get a cold) and suction machine rental, disposable supplies (hoses, filters, suction catheters and glove trach dressings) and monthly trach changes. The cost of those supplies has gone down as we became more comfortable with less frequent hose, filter and trach changes, and switched to plain old soap and water for trach care. As far as we can figure from the slow Medicare/United Health Care/Apria process, we are charged $283 a month for a single vent. Because we qualified for financial aid from Apria for 2009, we now pay only for supplies, about $100 a month.

2016 Update. Medicare now pays all except $179 per month for my ventilator. They pay 80% of the cost of replacement hoses, filters, etc. I have found that for suction catheters, gloves and gauze squares. I can buy them online for less than my Medicare copay!

(Added notes: This amount varies considerably depending on whether you have other insurance, who your equipment provider is, etc. A quick poll of a few other ALS patients on vents showed that most paid far less if anything at all! And, contrary to what many people are told by health care providers, no round the clock, paid professional nursing care is required! Family and friends can be trained at no charge by your respiratory equipment provider, and can provide all the care you need because of the ventilator.)

Burden of Care?

What about the burden my care puts on my husband and friends? The only daily additions to my care are trach dressing changes and suctioning. Trach care takes about three minutes once a day. (I have a Bivona brand trach with no inner cannula [a tube within the trach tube] to change.) Suctioning takes about three minutes also, and the number of times a day I need suctioning varies from a few to a dozen. There are about two hours a week needed for equipment maintenance and an occasional nebulizer treatment to be done. All that doesn't add up to a lot of extra time, but when added to the hours of care I already require it does count. On the positive side, it is easier, faster, and much less frightening and frustrating to suction me than to assist me through a bad coughing spell.

As any caregiver knows, the burden of care can't simply be measured in hours. The stress and emotional toll can be much worse. For example, I can never be left home alone. Actually, it was probably every bit as dangerous for me to be alone for the last several years, but it is "officially" dangerous now! Thanks to having a live-in helper who, although she has a full-time job, allows my husband to get away in the evenings and on weekends, being available is now only annoyingly restrictive to him. And with two wonderful friends and my daughter, who were also trained in the basics of vent care, he gets time to run errands on weekdays and even take a full day off once in a while.

Being on the vent has made many things easier, however. Even though we have to pack a laundry basket of "just in case" equipment to leave home, I am a lot more portable and able to go places than before simply because I feel good again. For him, the good news is that I can accompany him most places. The bad news is that I can accompany him most places!

Clear Sailing

I am no Pollyanna. I am well aware that my safe harbor is a temporary shelter. My ALS will continue to progress, taking the wind out of my sails and warping my timbers. There will come a day when I will need to decide if it is time to abandon ship, but in the meantime I can and do enjoy my life. It is so much easier to focus on the positives when breathing isn't a moment-to-moment battle! Thanks to the vent, today I am enjoying holding our newborn granddaughter, scanning the pages of children's books so I will be able to read to our 14-month-old granddaughter, working on Web sites. For years I was slowly disengaging from life, withdrawing, preparing to leave. Now I am re-engaging, rebuilding, and truly enjoying life.

It is a beautiful spring day and the breeze is gentle. I am going to weigh anchor, raise the mizzen mast and go for a little sail around the yard to make plans for this summer's gardens ... and I'll be planting perennials, not annuals. Life is very good here in Safe Harbor!

Diane Huberty, 56, of Fort Wayne, received a diagnosis of ALS in 1985. She retired from her position as Neuroscience Clinical Educator at Parkview Hospital in 1995 and has since become involved in computer work including Web site design and photo editing and restoration.

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