This took place between 1997 and 1999. No need to worry about my current health. Last in the series... bet you're glad to read that!
After getting discharged from the hospital for the last time, I began taking a more aggressive stance regarding my condition. I was fed up with being told things that didn't seem true and often made no sense considering what I knew about myself. I had never had any allergies as a child or adult. I was 50 years old when this started and allergies do not pop up in the short period of a month. Neither does Asthma ( a favorite diagnosis by a few docs). It felt and acted like an infection from the beginning but was not treated that way at the beginning and later was treated as a secondary infection as a result of an ongoing condition.
It was called "asthma", "chronic bronchitis", and that great catch all... "COPD." You know what COPD is? It stands for Chronic Obstructive Pulmonary Disease but really means "We have no idea what is really wrong with you." Doctors, I learned through this ordeal, are as stumped as anyone when it comes to something that fits too many possibilities or doesn't fall into the neat diagnoses found in their medical books. It's a rare doctor who will admit he is stumped and seeks help. Their is a certain level of ego that is part of the makeup of those who enter the medical profession. And the ego is a master at control. Believe me, I struggle with mine all the time.
I found that doctors are less interested in curing you than they are in maintaining you at a level that keeps you dependent on them. I don't think that is their intent. I think it is just how they learn to function. It just seems to be the best they can do in some cases. In Palm Beach County (and, I suspect, a lot of other places) I found people on medications for life that should have been temporary treatments. A co-worker who also had a lung problem similar to mine was on prednisone for 12 years. As a result he had a huge number of bone problems due to a lack of calcium. The prednisone depletes calcium rather quickly.
In addition to that co-worker, there were two others who had chronic lung problems. I began to suspect something known as "sick building syndrome" and made complaints to the company and to the health department. The health department could not (or would not) do anything, they told me, unless someone died whose problems could be traced back to the building. I had no intention of being that person. The company made a few cursory tests in the building but decided I was a troublemaker or was perhaps angling for a lawsuit and found no problems. Even though they were well aware of the toxic mold in the stairwells.
In the end, I had "fired" one primary doctor, one pulmonary specialist, one ENT specialist, and two infectious disease specialists. I had been on the following medications:
Albuterol inhaler (2 puffs twice a day and as needed)
Flovent (two puffs twice a day)
Prednisone (5 mg per day)
Ciproflaxin (antibiotic, 750 mg 3 times a day)
Prevacid (30 mg once a day for acid reflux)
... for 18 months. Higher dosages for some at various times. And a few others for short periods which triggered adverse side effects I refused to put up with and which were not believed by the various doctors who prescribed them.
At the end of two years, I had quit the inhalers, dropped all antibiotics and prednisone and stopped the Prevacid in favor of over the counter ranitidine (generic version of Zantac) and that only once a day just before bedtime so I don't wake up with heartburn in the middle of the night. And I didn't die. Or get worse. Or have relapses. Slowly, I built up my lungs as best I could. I adjusted my diet to reduce my exposure to foods that aggravated my acid reflux problem.
I am now a doctor's worst nightmare, the Patient From Hell. My cholesterol went up to 204 and my good cholesterol was poor. A new primary doctor on my first visit to him offered to put me on Lipitor. I said "You can prescribe it if you wish but I won't take it."
"Would you rather have a massive heart attack?" was his reply.
"If I do, it would be my choice! You suggest treatments, I decide if I will take them. If you cannot handle that, you aren't going to be my doctor."
Instead of taking a statin, I got more exercise and altered my diet to reduce red meat and increase fish and poultry. My cholesterol dropped to 186 and the ratio of good to bad dropped to 1-3 (recommended by the AMA at the time). There are people who need these drugs and that should take them. I am just not one of them.
And that, my friends, is where I stand today. I am open to advice; I am willing to listen, to have treatments explained to me as clearly as possible. But I no longer just follow doctor's orders blindly. And I never will again. There are good doctors (most), great doctors (too few) and mediocre doctors (too many) and you have no way of knowing which is which until it might be too late. They are not gods, they are just human beings.
I still have minor problems with my lungs from time to time and I keep an up to date albuterol inhaler in my medicine cabinet just in case but haven't had a need for it since 2000. I truly think I would have been through this problem in a few months in 1997 if the doctors had simply believed me, had just listened to what I had to say.
And now I will never write about this again.
Addendum: Here's a story that is worse than mine...
Don't let a doctor destroy your baby's hearing
A Night Unremembered
7 years ago