Ventilator-Assisted Living©

Summer 2002, Vol. 16, No. 2

(continued)

From Negative to Positive

Lewis Gumerman, MD

I finally made the transition to positive pressure (volume ventilator with a mouthpiece during the day and face mask at night) in the winter of 2000, but I had been warned about the ultimate need to do that as long ago as 1989. That’s when Geoffrey Spencer, OBE, MB, FFARCS, told me that, as my vital capacity decreased and I aged, the chest cuirass would prove inadequate. He recommended intermittent mouth positive pressure ventilation and introduced me to the PLV®-100. But, as a respiratory polio survivor, I had been using the negative pressure system since the late 1950s after I moved out of the iron lung, and change in procedures has never come easy to me.

When Mark Sanders, MD, my pulmonologist in Pittsburgh, suggested in the early ‘90s, gently at first but gradually more forcefully, that I switch to positive pressure with a face mask, there were a number of false starts. The process was complicated by several factors.

I could not manage the mask alone. Someone would have to be available all during the night to make adjustments should they be necessary, and in the beginning those proved very necessary. My late wife, Ruth, was an anxious sleeper, so I was reluctant to have someone walking in and out of the bedroom during the night, responding to leaky mask problems. Not convinced that the change was going to work, I did not, or would not, buy a humidifier at first, so I could not use nasal ventilation for more than an hour or so before my nose became stuffed up.

With these excuses, I managed to put off a serious run at this problem.

Then Ruth became ill with a malignancy and chemotherapy that made nighttime interruptions out of the question. I told Dr. Sanders we would have to revisit the issue later. Meanwhile, periodic annual overnight oximetries both at home and in the sleep lab showed worrisome periods of oxygen desaturation, and the headaches were fierce.

After Ruth died in the fall of 1997, I finally got serious and bought a humidifier. Dr. Sanders ordered a steroid nasal spray for use at bedtime. By this time I had arranged to have my daytime helper sleep over to lessen my dependence on my grown daughter. Thus, all my excuses were invalidated.

Oddly, the motivation to make a determined push came on a trip to California to visit my son and daughter-in-law whose help made all the difference. The new system worked from day one. I have been very satisfied with the result, although mask seal (until now Respironics’ recently discontinued Gold Seal®) remains difficult at times.

At first, following what is probably a common mistake of beginners, I thought “tighter is better.” It was only a matter of days before the skin and cartilage of my nose demonstrated the fallacy of that approach. Every time frustration with my most common leak, high up on the bridge of the nose, leads me to tighten up on the top straps, I am reminded the next morning of the truth of “loose as possible is best.” Sometimes I have periods where the mask fit is impossible. (Suggestions from other mask wearers would be appreciated.)

I have three PLV®-100 ventilators: one by my bed; one that mainly stays in my van for travel; and one in the room where I spend most of my time during the day. I deactivated the low pressure alarms (signing off on that with Respironics’ lawyers) on all but the one I use during the night.


Congestive Heart Failure, OSA, and BiPAP

Fred Schroader

I was diagnosed with obstructive sleep apnea in July 1999. I had just begun showing signs of congestive heart failure. I am overweight and that was one of the reasons my doctor suspected that I might have apnea. I did not snore, but did become tired during the daytime.

When I was tested for sleep apnea, my oxygen saturation was 79%. I had premature ventricular contractions (PVCs) of 17 per minute, and my heart started to enlarge. I began using bi-level positive airway pressure (BiPAP) immediately and 100 mg of Coreg daily. BiPAP was prescribed instead of conventional CPAP because, after two sleep tests at a local hospital, it was determined that I was not able to exhale against the airflow of CPAP.

After using BiPAP for three months, the PVCs decreased, and my energy level increased dramatically. The physicians were amazed at my sudden turnaround.

I use the Tranquility® BiPAP with the Simplicity™ nasal mask (Respironics, Inc.). I went through a couple of masks before settling on the Simplicity. With the other masks, I experienced soreness around the bridge and on both sides of my nose. The only way I found relief was to place band-aids over the affected areas.

Then I tried the Simplicity™ and, because it was a nasal mask, I felt more comfortable with it than with the full-face masks. One night I forgot the band-aids, and the next morning I was pleasantly surprised to find I had no marks or soreness around my nose.

It took me about 10 days after I first started using the equipment to be able to sleep through the night. Another benefit is that I do not need to get up in the middle of the night to urinate.

I experienced dry mouth at first, but found that a humidifier provided no relief. I decided to keep a piece of hard candy in my mouth to keep it lubricated.

It did keep my mouth lubricated, but, by morning, my mouth felt gummy from the sugar in the candy. Then I tried a piece of Dots® made by Tootsie, which is more like a hard gumdrop. It works very well; in the morning, only a trace of sweetness remains.

My physician advises me that if I lose 100 pounds I might not need to use the equipment, but I am accustomed to having its soothing sound lull me to sleep.

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