Seeking the Correct Care for Sleep Apnea

• By Richard Brown, Paul E. Lassanske
• Jul 01, 2003

Sleep apnea can be a dangerous condition that creates many severe medical problems. Physicians and all health care providers taking care of patients should be involved with the diagnoses and especially the follow-ups for the patients.

Studies of sleep apnea are currently being performed to test patients for this medical problem. At the present time, more information is becoming available on the Internet. Millions of Americans are being asked, "Do you snore?" and even when they get the answer "yes" they rarely get the proper treatment to help them. Depending upon the physician and with whom the patient consults-if they do seek help-they receive many different answers, little of which really helps the patient.

If more people saw the right doctor, they might get the proper help they need, instead of just a prescription for a medication.

A recent article in the Wall Street Journal, written by Joseph Pereira, quoted a study by the Rand Corp., a non-profit research organization based in Santa Monica, Calif., reported that just 55 percent of patients get correct care. This study was recently published in the New England Journal of Medicine.

I am a patient who suffers from sleep apnea and for more than a year, I could not get a good answer as to how to help myself with this severe problem.

Most of the articles I have read pertaining to sleep problems just give statistics and they address how money can be made in the sleep market. More articles should be focused on how companies can build up their business by giving patients good service.

My Story

I pushed a little harder than most to get good answers about sleep apnea because I was in the home medical equipment business, but it took me more than a year to get the right answers.

My wife and I were in the respiratory business for nearly 20 years and we built it by providing the best possible service. We educated both our patients and their physicians as to what equipment was available to the patient and how best to use that equipment to achieve the most benefit for the patient.

I was president of the New Jersey Association of Medical Equipment Suppliers (J.A.M.E.S.) from 1984 through 1986, when our board worked as a team to benefit all of our members. After selling our business, I have consulted with numerous companies and doctors, including the setting up of a sleep lab with five pulmonologists.

I was seeing a cardiologist in 2001 for atrial fibrillation and it was at his suggestion that I have a sleep study. My first study was done Feb. 27, 2002. I received a CPAP April 23, 2002. When it was delivered to me they guessed that I needed a medium-sized mask, without seeing me. I received 10 minutes of instruction when it was delivered. I could not tolerate the machine and mask. I contacted a friend who is in the respiratory business and received different masks, because when I called supplier to tell them my problem, their answer was that I would eventually get used to the one they provided. The same response occurred on their follow-up call 90 days after I received the equipment.

Nothing improved in my condition during the year, so I went in for another sleep study Oct. 20, 2002. The only follow-up I received was from the physician's lab office stating that I had a sleep problem and that I should continue to use the CPAP. I told them that I couldn't tolerate the machine and mask and they too said I would get used to it.

All during this period my sleep was restless and my snoring did not stop. This all culminated when on Dec. 17, 2002 at 5:30 a.m. I had a nightmare that someone was chasing me, and I thought I jumped over a fence to get away. What I did was jump off the side of my bed and proceeded to hit my head on the side of a chair. I also was taking Coumadin at the time. I ended up in the hospital with five and a half hours of brain surgery for a subdural hematoma, and a three-week hospital stay plus another three weeks of intensive rehabilitation. During my hospital stay, I was put on a BIPAP and the respiratory therapist took the time to tell my family why I was better off with the BIPAP, although I was still having problems with a severely dry mouth and an ill-fitting headgear. In the hospital no one followed up on me in the morning to see if I had any problems. When I complained that I did, once again I received the same stock answer, "You will get used to it."

I left the hospital Jan. 9, 2003, and with enough complaining by my wife to the supplier, I received my fourth mask. My friend in the respiratory business also loaned me a BIPAP. I still was having problems using the equipment and was sent for another sleep study June 24, 2003. I bought my own mask (sleep pillow) and they set me up on a BIPAP. An amazing thing happened while I was at the sleep lab; the technician asked me about the problems I had using the machine at home. She told me that my problem was that I kept my mouth opened while asleep. I used a chinstrap in conjunction with the mask during this study and it helped me to tolerate the machine all night. I also was given a swivel to add on in case I wanted to sleep on my side and an extender that made the mask more tolerable. All of these additives have finally helped me to get the proper sleep that I so sorely needed.

Previous to this last sleep study, my son learned of a chinstrap that was on the market to help keep the mouth closed during sleep and would help the snoring. When I returned home after the last sleep study, I continued to use the chinstrap with the BIPAP and I am happy to report that it has been great. Someone from the sleep lab called me to confirm my positive results. They are now writing an order for my supplier to exchange the CPAP for a BIPAP with new pressures, and I will return the one I have borrowed. I also was instructed to see my physician for a follow-up in August.

I have read numerous articles about sleep apnea in order to find a solution for my sleep problems but I couldn't find an article that addressed my specific issues. There was an article that I read recently that was putting together a task force to study sleep apnea. I called to volunteer my services, however, I was turned down because I was not a member of their organization.

Perhaps the industry should produce more resources such as videos and literature to help patients better understand the problems they are having with their CPAP and BIPAP machines. In that way maybe we could spare the long-suffering patient from ever having to go through the terrible series of circumstances that I have just experienced. I am extremely happy to say, I am one of the lucky ones. I am fully recuperated and am back doing everything just as I did before.

This article originally appeared in the July 2003 issue of HME Business.