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Post-Polio Health (ISSN 1066-5331)

Vol. 11, No. 4, Fall 1995

Vignettes of Polio Survivors Using Ventilation Assistance (continued)

Patti Strong, California

Since contracting paralytic polio at age two and being hospitalized for nine months, I have had slight scoliosis, a slightly shortened left leg, and a totally flaccid right arm. About ten years ago, I developed profound muscle weakness in my left arm. Not having had bulbar polio, I never expected to have respiratory difficulties. However, about two years ago, at age 45, increasing upper body weakness made sleeping, speaking, and even breathing difficult. A Respironics BIPAP® S/T for night-time ventilatory assistance has given me considerable relief.

After months of experimentation I have settled on a couple of different masks, alternating them for comfort. Most of the time I use a triangular, soft rubber Sullivan Bubble Mask with 2-3 foam rubber spacers at the temple. Two wire twisters from plastic sandwich bags help secure the soft bubble portion of the mask to its hard plastic shell eliminating annoying air leaks when I turn my head.

Occasionally, especially if I want to read in bed, I use the T-shaped Healthdyne mask with nasal pillows since it covers less of the face and obscures less of my vision. I am troubled by mouth and nasal dryness even though I use the Respironics humidifier. Putting a heavy cream moisturizer inside my nose at bedtime and using the Sullivan mask certainly reduce the dryness problem. Despite the nagging inconveniences of the BIPAP® System and its accessories, I am highly enthusiastic about having it and use it faithfully, even when I travel. I view it as an orthotic or brace for my respiratory muscles, thus prolonging their ... and my ... life.

Yvonne Hudson, Winnipeg, Manitoba

At the onset of poho in 1953, I was totally paralyzed, and have remained a quadriplegic since that time. My first six months were spent in an iron lung, followed by using a rocking bed for three months. I used no respiratory aid for 14 years, during which time my respiratory functions gradually deteriorated resulting in severe underventilation, and, eventually, respiratory failure, which landed me in intensive care. Then it was back on the rocking bed for about 12 hours a day, supplemented by using a Bennett AP-4 IPPB (intermittent positive pressure breathing) with a mouthpiece at regular intervals the rest of the time. This arrangement worked well until about 10 years ago when I again began to notice symptoms of nocturnal desaturation.

For the past seven-plus years I have been successfully using LIFECARE's PLV-100 with a Respironics silicone contour nasal mask at night. By placing a small piece of chamois with hypoallergenic tape over the boney part of my nose, I have avoided any problems with pressure soreness. The headstrap required some experimentation and I use a hybrid. It consists of two velcro-fastened straps the top one goes around my forehead, the bottom one below my cheekbones — attached to a soft piece of flannelette to pad the back of the head. Using a satin pillowcase enables me to turn my head easily during the night without shifting or dislodging the mask.

During the day, I use a mouthpiece with either my PLV-100 or my old Bennett AP-4 as frequently as is necessary to breathe comfortably. If I am going to be away from home more than 4-5 hours, I take my PLV-100 with me. The auto lighter cable, which provides a power source while driving, is invaluable for traveling!

Barbara Carter, Granada Hills, California

The equipment firm seemed unaware that one has to use a humidifier with the BIPAP® System, and I had painful problems with cracked nostrils until another polio survivor figured out why.

The firm's respiratory therapist didn't tell me that the ADAM circuit nasal pillows by Puritan-Bennett came in various sizes. Again, I found this out on my own and experimented until I found the right size.

Richard Thamm, Wilmington, Delaware

I used the lip-seal type mouthpiece which was initially totally unsatisfactory and eventually caused me to permanently lose closure of my front teeth. Now I use ADAM nasal pillows by Puritan-Bennett.

I have become very familiar with the controls of the ventilator so that I can make adequate adjustments in air flow in order to compensate for occasional small leaks. These can be frustrating and difficult to isolate in the middle of the night.

Linda Bieniek, Chicago, Illinois

For pressure sores from the two nasal masks I alternate every few days, I toughen the skin under my nose by applying alcohol, and avoid creams and lotion that soften the skin in areas affected by pressure sores. The BIPAP® System and nasal mask have created sinus problems and increased the amount of mucus. I perform nasal irrigation to release the mucus and prevent it from dripping into my lungs and causing upper respiratory infections (acupuncture treatments help when the mucus secretion is severe). I also use a humidifier and a vaporizer and make sure my filter and tubing are kept clean. To adjust to the air flow and claustrophobic feeling, I use a variety of relaxation techniques, visualize the air flow into my lungs, and hold the top of the mask for brief periods to reinforce my own sense of control.

David Ronfeldt, Manhattan Beach, California

Three steps — getting used to the mask, being able to fall asleep, and then being able to remain asleep, against the background of getting the right mask and getting all of the machine settings right — pretty much describes the process of adaptation in my case.

I rushed into the transition from a chest cuirass to a BIPAP® System, trying to force my way during a holiday break. It turned into a major ordeal and after a couple of weeks of uncertain ventilation, mounting sleep deprivation, and erratic progress, I retreated to a modified cuirass for several months. Then I renewed my efforts to make the shift, this time using a gradual approach in which I would typically start a night's sleep with the mask but switch back to the cuirass after a few hours. I used afternoon naps to gain experience adapting to the mask.

The first step is to get used to the mask by spending time on it as well as get the right mask and the right size. My physician recommended that the vendor provide a variety of masks for me to try. Perhaps a "beginner's package" should be made at a beginner's price. I encountered a tendency among therapists to fit me with masks that were too small, whereas a bit too large may be preferable. I have settled on the Sullivan Bubble Mask.

The second step is to fall asleep with the mask. Part of this is just sticking with it. For me, it was also a matter of getting the right settings on the machine. While I had good, general guidance, I had to do the refinements on my own through a lot of trial and error. After making several trial adjustments, one night I slightly changed one setting and immediately had my first good night's sleep. I gather than many physicians and therapists prefer, if not insist, that they determine the settings. My experience may imply that physicians and therapists are essential advisors and collaborators but polio survivors should take an active role in figuring things out, even if by trial and error, a point my physician agrees with.

I continue to have a difficult time with “parched mouth syndrome,” an extreme dryness in which my lips, gums, tongue, roof of my mouth, and the front of my throat are all stuck together, and no saliva is flowing. I constantly wake up and never get a full night's sleep. I have experimented with many things, such as I am now sipping water from a bicyclist's Camel Bak.

A.J. Nadeau, Saint Louis, Missouri

In 1948, at age 13, polio got me. I went into a two-week coma waking up in an iron lung with a tracheostomy leaming that I had the chicken pox and double pneumonia. I was weaned from the iron lung and the trach by March 1949. Life seemed normal to me until 1982 when I noticed breathing difficulties especially while mowing the lawn.

After visiting a pulmonary specialist, I tried several noninvasive breathing devices. The chest cuirass could not be fitted to my scoliotic chest and facial masks were too claustrophobic. My blood gases never normalized on supplementary oxygen. I ended up in an emergency room and was trached.

Getting used to the ventilator was hard at first, but now I fall asleep quickly. Being able to go without the vent for a day allows me to take "vacations" once or twice a month. To help my chronic back pain, I started a neuromuscular re-education/myofascial release program with my doctor's consent. A side benefit has been an increase in breathing capacity allowing for more frequent "vacations."

Richard Daggett, Downey, California

I contracted polio in 1953. Within 24 hours of entering the hospital I was given a tracheostomy and placed in a tank respirator. I graduated from the tank to a hospital bed, using a cuirass. Ten months later I was free of any ventilator, my tracheostomy was closed. For the next eights years I used no mechanical ventilator, but then my CO2 began to rise slightly, and I used a Thompson Zephyr for chest stretching and cough augmentation. A few years later I returned to using a Monaghan and cuirass at night.

In 1984 1 experienced a sharp drop in my pulmonary capacity, no doubt due to the late effects of polio. After trying several noninvasive mouthpiece/nasal options with little success, I made the decision to have another tracheostomy. My upper extremity strength is limited, and I could never manage to put on or remove the cuirass by myself, nor the mouthpiece/nasal apparatus with its many straps and snaps. Using trach positive pressure, I can connect and disconnect the ventilator, and get in and out of bed bv myself. (Excerpted from IVUN News, Fall 1994, Volume 8, Number 2)

Readers: If you would like to network with any of the individuals who related their experiences in this article, please contact IPN. David Ronfeldt, of Manhattan Beach, CA, sent an extensive description of his experience of adapting. With his permission, we will share this with anyone who asks.

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