What I will write is one of several horror stories I have. Right now, this is the only one I am up to writing. The others are still too raw, and more recent/ongoing.
My husband was working for a small technology startup that produced cardiac monitoring equipment. He began having heart issues of his own. Thus began our first escapade through the health care nightmare.
Doctors were attempting to find out what was causing the issue. They needed to do a number of tests, and they started with tests involving the cardiac system. Once these proved fruitless, they began to look elsewhere. By the time they came to "sleep apnea" the employer-provided insurer stopped paying. Even when we would call in advance to get approval, they would verbally give it, then deny payment. Doctors began to refuse treatment since they knew they would not get paid.
So I should stop here to explain that sleep apnea caused the heart attack that killed my husband's father. It affects different people in different ways. In my husband's family, it manifests as heart disease (although we would not learn this until much later).
My husband kept getting sicker, and was finally having to take a lot of time off of work. Eventually, the company fired him. In at "at will" state, they don't need a reason, [snark] although since he couldn't get medical care because the employer's insurance would not cover anything leading to him being too sick to go into the office never perhaps occurred to the employer [end snark].
We moved him to my employer's insurance, which was no better since they would not accept any claims relating to sleep apnea as it was a pre-existing condition. My husband's doctor eventually was able to get him treatment (a mask - that's all that was needed), by working through his network of doctor friends and essentially not using the words "sleep apnea" on any insurance documentation. I will not name any names here to protect the doctor and his colleagues who saved my husband. My husband's mask was something used by emphysema patients, but doubled well enough as a CPAP.
Naturally, we ended up paying for many of the tests out of pocket. For years afterward, creditors were calling the house for payment that we did not have. We ended up using one of those debt resolution services, along with much of my 401K, to pay off the debt. Retirement seemed way too far away, and at that time, I wasn't sure he would live to see it anyway.
Here's what we learned through this odyssey. First, NEVER get any disease that isn't well known. Do not be on the front end of a disease. If doctors are still learning, insurance companies are totally denying. It will be years before some companies might cover the condition. Second, get a doctor who cares, a lot. Because that may be the only thing that will keep you alive.