The year 2011 makes me think of Judith Viorst's book title “Alexander and the Terrible, Horrible, No Good, Very Bad Day”. It was a terrible, horrible, no good, very bad year that began innocently enough with a failed root canal and evil heartburn. The molar was dealt with by an oral surgeon; the heartburn resolved completely with Prilosec.
February brought a winter cold, a strange rhinovirus that began with a sore throat then moved on to my sinuses where it set up shop with a mucus factory. I say it was “strange” because when it left my nose it took its mucus factory into my stomach instead of my lungs. Eating was painful, I burped constantly, I lost weight, and I had such extreme fatigue that I lost interest in my usual activities. Nothing seemed to relieve my poor stomach until, on a whim, I treated it with – of all things – Mucinex. Two or three hours later the vise around my stomach loosened and I could eat without discomfort. A few days of Mucinex and I was back to normal. Ta-da!
Our spring pollen season was one of the worst on record. I couldn't leave the house for two weeks and, even with the house sealed up, Benadryl barely relieved my sneezing, burning nose and itchy eyes. When those symptoms finally abated in the second week of May, I became aware of my breathing. From time to time I had air hunger, that is, I had to inhale more deeply than normal. This shortness of breath, called dyspnea by doctors, got much worse as the days passed. My best guess was that the air hunger was related to inflammation of my upper airway by excessive pollen; my worst fear was that it indicated some developing lung disease. By the end of May I was gasping like a carp and headed for the ER.
That first trip to the ER revealed nothing but ruled out many things. My chest x-ray was clear. My oxygen saturation was 100% on room air. My labs were normal. I was not coughing, wheezing, or having chest pain. The ER doc agreed I probably had an inflammatory process from the earlier allergies and sent me home with antibiotics and a five day burst of prednisone, giving me a tentative diagnosis of bronchitis.
To my dismay the prednisone didn't help at all. In fact, my breathing was so much worse two days later that a friend took me back to the same ER. A different doc ran yet more extensive blood tests (all normal), ordered a chest CT (normal), gave me a neb treatment (which did not help) and decided I had an exacerbation of COPD with an anxiety component. This, despite no radiographic findings, no wheezing, normal peak flow readings, no history of COPD, and oxygen saturations of 100%! He sent me home with a bottle of Xanax to contemplate the end of my life as I know it.
The first two weeks in June were some of the darkest days I've ever experienced. Sometimes I would awaken in the middle of the night gasping for breath, so sleep often eluded me. I spent most days under my community quilt, waiting for those rare moments when my breathing would ease temporarily. Like a fool, I didn't question the diagnosis of COPD despite all evidence to the contrary – why would I? Decades of smoking, living in the smut that passed for air in Houston, and growing up next to working oil rigs all convinced me it was a plausible, even deserved diagnosis. A few years of clean living in the Rockies could hardly offset my history. I would probably still be lying under my quilt if certain Kossacks hadn't taken it upon themselves to insist I get another opinion.
Enter Dr. Matthew Bowdish of Storms Allergy Clinic. One of the first things he did was disprove the diagnosis of COPD with various pulmonary tests. Bless you, Dr. Bowdish! His initial best guess was that I was still suffering from airways inflamed by my earlier seasonal allergies and exacerbated by smoke from wildfires. He prescribed a steroid inhaler and various other meds and – best of all – he became my partner in helping me find my way back to good health. I left with a treatment plan: “Come back in one week. If this doesn't work, here's Plan B.” As time passed and it became clear that allergies were not the source of my illness, you would think Dr. Bowdish would send me on my way. Instead, he said, “We're a service business. I'm not done until you have answers.”
I spent the entire summer gasping for breath and looking for answers. The dyspnea was not always present and never predictable. Sometimes it disturbed my sleep. Sometimes I slept well and didn't start breathing hard until later in the day. Arranged by Dr. Bowdish, I had a sinus CT, more comprehensive pulmonary function tests (which validated the results at the allergy clinic), an echocardiogram, a nuclear treadmill stress test, and long visits with a cardiologist and a pulmonologist. I mentioned to everyone I encountered that the only time the air hunger was almost always present was when I first woke up. After that it came and went with no rhyme or reason. The last specialist I saw, a pulmonologist in late August, could only confirm my months-long diagnosis of dyspnea. When I thanked him before leaving I said I wished he'd had a diagnosis for me. “No, you don't,” he replied. “you don't want any of the things I diagnose.”
As summer turned into fall my symptoms very, very gradually resolved on their own until I was 80% better by the beginning of November. I could live with that. Besides, I had new problems to worry about. My left rotator cuff, injured during one of the cardiac tests, was not responding to conservative treatments and would soon require surgery. The retina of one eye was threatening to detach, requiring serial visits with an ophthalmologist. Another molar had to be extracted. My annual mammogram revealed a questionable finding, requiring further tests and a week of anxiety. My vocal cords weren't working properly; I could no longer raise the pitch of my voice. I developed vertigo for a short time. My stomach went south again, sending me to the ER in early November with pain and a complete inability to eat solid food for almost a week.
You can imagine my dismay when yet one more doctor shrugged his shoulders and said he didn't know what was wrong with me. “I predict you'll be back to eating again in two days,” he said, based on absolutely nothing. Worst of all, when I asked him to suggest things I might drink, as I was able to tolerate fluids, this asshole replied, “Water is good.”
I tried to make an appointment with the gastroenterologist who does my screening colonoscopies – but she was booked solid until January. I confess I agreed to see her Nurse Practitioner on November 22nd only because I was running out of options and not because I thought she'd do me any good. My kids found me in a state of despair when they arrived on 11/21. “I fear I won't get diagnosed until my autopsy,” I told them as we held each other and stared into the abyss.
The night, it is said, is often darkest just before dawn.
Cindy L. Billock, RN-NP, took a comprehensive history of the past year along with a time-line. She examined me from head to toe. She somehow, amazingly, managed to schedule me for an endoscopy the following day, even though it would be the day before Thanksgiving. She asked dozens of questions. And then she said something like this: “It's possible that many of these things – your dyspnea, your vocal cord changes, and your stomach problems – are related. You could be having reflux that was 'silenced' by the continuous use of Prilosec. You could be aspirating stomach acid, which would explain the breathing problems, and if acid is getting into your lungs, it's also splashing on your vocal cords. That's my working hypothesis. Tomorrow's endoscopy will tell us much more.”
My son and dil were tearful when I awakened from the endoscopy. Fearing the worst, it took a few minutes to realize they were tears of relief: no signs of stomach cancer! The doc doing the endoscopy said my stomach was a red mess, most likely from years of taking Naprosyn, but it was treatable. Cindy had already added ranitidine to the daily omeprazole (Prilosec), enabling me to start eating again by Thanksgiving.
This is life, not a movie, so there was no segue into happily ever after. It became clear that I would have to stop taking all NSAID's in order to heal, and that has left me with some serious pain issues, not the least of which was caused by my shoulder surgery on 12/22. That same surgery bounced me back into the ER a week later with a stone colon. Still, I was able to tell Cindy last week that my breathing is now completely back to normal, my stomach is healing, my appetite has returned, and my vocal range is improving. Once this shoulder heals and I can dispense with the fucking sling, I'm looking forward to a very different kind of year in 2012.
Every paragraph of this diary illustrates one or more healthcare lessons.
Para 1: Prilosec quite clearly states on the box that it shouldn't be taken for more than 14 days without “consulting your physician”. Perhaps if I had seen a gastroenterologist last winter I could have saved myself months of pain and thousands of dollars.
Para 2: Mucinex? Really? I was pretty proud of this “cure” … but subsequent events made me wish I'd talked to someone about what I was experiencing.
Para 3: How you tell your story has consequences. Whenever I told my dyspnea story, I said it seemed to begin with allergy season. My conviction skewed the way others considered my case. If I had said it seemed to begin with heartburn, the arc of this story might have been quite different.
Para 4: Every trip to the ER results in a diagnosis on your medical records. I didn't challenge “bronchitis” or even “COPD” and “anxiety” two days later, because I have Medicare and don't have to worry any longer about obtaining and affording health insurance. If you have (or hope to have) private health insurance, don't let an incorrect diagnosis go unchallenged.
Para 5: Don't tolerate incompetence – your life may depend on it.
Para 6: Sometimes, even when you're so sick you think you can't possibly engage in rational thinking, you have to be your own advocate. You have to make good decisions, do some research, and choose a path. Don't just lie there.
Para 7: See para 6. I found Dr. Bowdish by making decisions (“I need a specialist. That specialist is probably an allergist.”) and by doing some research for the best allergist in my area.
Para 8: Don't assume doctors hear what you're saying. I told everyone that I was always short of breath when I first woke up. The fact that no one picked up on it until November makes me think no one was listening carefully until November.
Para 9: Don't do what I did during my cardiac workup – don't try to be a good little camper when something is uncomfortable to the point of pain. A nuclear scan of my heart, done both before and after the treadmill test, required me to lie flat on a table and reach high over the top of my head for a strap I was to grasp for fifteen minutes. My 63 year-old shoulders have adhesions and somewhat limited range of motion from prior surgeries and “degenerative changes” (the polite term for arthritis), but I didn't want to mess up the flow of this very expensive test. What's the worst that could happen, right? Heh.
Para 10: ER's are for cuts and heart attacks. And sometimes they hire clueless doctors.
Para 11: Nurse Practitioners are better than doctors in treating many chronic illnesses. They do more patient teaching and they spend more time with their patients.
Para 12: I need to remember this lesson!
Para 13: See above for para 11. If you're fortunate enough to wind up in the hands of an excellent diagnostician, particularly one who listens to your input, it's a very lucky day for you.
Para 14: Don't avoid a test because you fear the results. Knowledge is power, plus that feared test might give you very good news.
Para 15: If you are unable to take NSAID's because they mess with your stomach, list them as an allergy on your medical records. I learned that it doesn't matter how they get into your system; you could be given an NSAID IV during surgery and end up with an ulcer.