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Post-Polio Health (ISSN 1066-5331)

Vol. 15, No. 3, Summer 1999

A Survivor's Experience: Coming Home Again!

Audrey King, Don Mills, Ontario, Canada

A bout with pneumonia last winter landed me in a critical care unit where attempts were made to manage the illness with my usual mode of ventilation, a PLV-100 ventilator with face mask and an in-exsufflator, followed by several attempts at intubation. Finally, ventilation via tracheostomy, a mode completely foreign to me (and a decision my pulmonologist reluctantly made, knowing me to be a long-standing advocate of noninvasive ventilation), was tried.

When I had polio in 1952, we had no highly specialized hi-tech ICU, and "home care" simply meant coming home after two years to my family who, by themselves, met my increased physical needs while still expecting me to maintain the same independence, self-reliance and achievement that they had always expected.

I was in an iron lung for six weeks followed by five ventilation-free years; then I used nocturnal ventilation support via cuirass. As an adolescent, I hated this embarrassing secret, and I always wondered if I really needed it. After completing university, I came to Toronto to work and to seek an answer to this question.

Somehow in this quest I was routed to orthopedic doctors who stabilized my spine and decided that my breathing was no longer at risk. In short, following surgery, I was told by the orthopedic surgeon that I did not need the ventilator – I had just been psychologically dependent. Although mortified and embarrassed, I was thrilled to be rid of the monstrosity.

Within a few weeks, I started having bad morning headaches. At the time, I did not know their significance, and they were not taken seriously by the hospital staff. Within six months, I was back to work. I relished my new-found freedom, getting on with my career in psychology at the Ontario Crippled Children's Centre and traveling a lot. But symptoms of respiratory insufficiency gradually increased – morning headaches, waking up at night trying to get back the rhythm of breathing, falling asleep in the daytime while at work, on the phone, even when shopping. Night-time urinary frequency finally led me to a urologist, then to a physiatrist and a respirologist who gave me hell for thinking I could manage without ventilation.

I had grown up assuming that "doctors know best," but at this point I realized that my very survival depended on me: I had to learn as much as possible about post-polio respiratory insufficiency.

I came home with a cuirass – again. It did not fit, causing sores and leaks. I received no equipment maintenance plan, and it stopped working altogether on a holiday weekend in Michigan. Fortunately, a neighbor who was a vacuum repairman replaced worn brushes and got it going again.

My problems with the cuirass seemed so unending that I felt like the last polio "respo" in the world - yet common sense told me otherwise. I eventually discovered a large group of respiratory polio survivors in Edmonton, Alberta, with a well-established respiratory home care service. I also discovered the Rehabilitation Gazette containing a notice of the 1981 GINI conference in Chicago entitled, "Whatever Happened to the Polio Patient?"

For me, the conference was a watershed event, a turning point that empowered me with enough information to set my course. It was a meeting of knowledgeable physicians and ventilator users in a relationship of mutual learning and respect. I learned how to "frog breathe." I learned about customized gadgets and devices and positive pressure via mouthpiece or mask. I came home convinced that noninvasive positive pressure ventilation was the solution to my problems. And so it was. The switch to positive pressure (LP3) solved my problems and enabled me to get on with my career and advocacy initiatives, particularly those involving the long-term needs of ventilator users in Ontario. I had nearly 18 years of problem-free breathing until this recent episode of pneumonia.

I do not recall much of my several weeks in the ICU except for a terrifying fear that would not let me go to sleep: I was sure that I was of lesser priority for critical health care in today's severely restricted health care environment because of my significant disability. I was sure the staff would turn the monitors off if I went to sleep. Curiously, the only "rescue and relief" during this ongoing nightmare was my imagined midnight arrival of physician and respiratory therapy friends from that first 1981 GINI conference.

It was terrifying to be helpless and unable to communicate my positioning needs so as to maintain some function, however limited. Although extremely ill, I apparently made heroic efforts to carry on "self-directing" my care. Even when unable to speak, I gestured to be sat up or put in my chair, where I wanted to stay for hours. In their efforts to be "patient-centered," the staff listened until I simply fell over, being neither rational nor reasonable, at which point they called the shots.

My transfer from critical care to a medical ward was a real nightmare. Although I was in an observation room near the nursing station, the nurse/patient ratio was 1 to 8. No one yet understood my "disability" needs. I could neither move myself nor lie in one position for more than an hour. I was still too weak to call for help, self-direct or explain. Miraculously, friends and colleagues really came to my rescue, staying overnight for several weeks and coming often throughout the day to help with meals, provide basic care and assist the staff in becoming aware of my unique needs.

As my strength returned, my articulate, convincing, "self-directing" nature began to return. I insisted on getting up and dressed every day, although this process exhausted me for hours. My behaviour was not that expected of an ill patient "on" a ventilator full time. I still needed constant suctioning, but I was absolutely convinced that if I got home, I would get better quicker. My chest was a wheezy mess and suctioning was becoming more difficult, but I did know about my PLV-100 ventilator. Although the respiratory and nursing staff were concerned, my attendants, who assisted me prior to the hospitalization, were willing to learn trache care and suctioning, and sicker people were waiting for my hospital bed.

To go home, I had to accept 24-hour support - a combination of 30 hours of a home care RN per week, an insurance-paid RN overnight and my usual three attendants. It was great to be home at first, but as I looked around and saw the transformation of my home into a "hospital," it was not great at all. The overnight RN wanted to socialize; I wanted to sleep. The home care RN was an organizer, a tidy freak who could not sit still and seized every opportunity to organize for her convenience bathroom cupboards and drawers, putting things I use regularly out of my reach. She may have been an efficient nurse, but she did not understand the balance between nursing care and letting me be in charge of what I could. My attendants were excellent, comfortable with their roles and added functions. However, a problem of territory quickly developed, with the RNs having little respect for the attendants and not hesitating to embroil me in their unrest.

Five people around-the-clock whose schedules I had to coordinate, the lack of privacy, a geriatric cat whose vomiting on the carpet only seemed to increase, my 87-year-old, unsteady, deaf mum, who naturally expected me to again support her communication and daily living needs, not to mention my increasing suctioning difficulty and bronchospasm – it was all too much. I returned to emergency: an obstructing granuloma (soft tissue growth) was discovered below the trache tube and required my readmission.

Once the granuloma was removed by laser surgery at another downtown hospital, the news was bad – the back of my trachea had been eroded almost through to the esophagus by the tracheostomy tube. The surgeon put in a temporary soft-sponge cuffed tube, a Bivona, that he said he would replace in a week or so with a Montgomery T-Tube that would enable me to return to my previous mode of ventilation, a night-time mask and mouthpiece.

This was great news – except that my respirologist and respiratory therapists were not familiar with such a tube, and the otolaryngologist at my hospital felt that it was inappropriate: it was too soft and could fold on itself and suffocate me. It was not made to connect to a ventilator and could be pulled out by weight of the trache tubing. An anesthetic would be required for its insertion.

I felt like a pawn between respirology, otolaryngology, thoracic surgery and two different hospitals. The waiting for consultation and coordination was endless. Although I could have negotiated a discharge and put myself in a stronger position of decision making and control, I was afraid to because I did not know enough and was worried that "out-of-sight" would mean "out-of-mind."

By now I had learned that being articulate, knowledgeable and self-directing about my disability needs could put me in jeopardy in situations of illness that are unfamiliar. Moreover, questioning and conversation that reveals my knowledge can be intimidating and confusing to skilled health care professionals who are used to taking the lead. They may decide that I know more than I really do. They may not understand that "independence" makes me ask for as little help as possible and be reluctant to bring a problem to staff attention because I am sure that I can surmount it or that it will simply go away.

I have been home for several months now. I have not used the tracheostomy for weeks and have returned to mask and mouthpiece. My new wheelchair has power and zip in spite of the weight and bulk of the PLV-100 on the back. My latest goal is to get the new Pulmonetic Systems' LTV1000T, the size of a laptop computer, that weighs only 12.5 pounds, thus reducing the weight and dimensions of my chair considerably.

I am willing to try a button to keep the stoma in my throat open for a while, but I simply have to get this trache tube out of my throat. It is just sitting there, not being used, taking up valuable throat space.

Disability and acute illness are two distinct experiences that often get confused. Finding and keeping the balance between independence and dependence in situations of severe illness and hospitalization is a challenge for those of us with significant disability.