Yeah, this is mostly a travel blog, but also a life account as well. The title refers not to any trip we made, but rather to my extended, rocky, and still-unfinished journey back to health. So, bail out now if you were expecting a travelogue.
Sometime during our trip back to California from D.C. in June of last year, my nose started running almost constantly. I never felt congested, but boy was I going through boxes of tissue. Otherwise, I felt fine. In the early Fall, I started a dry cough as well, and by Winter I was having head congestion, lots of mucous, and more coughing. In January, both head and chest congestion, and now wet coughing, so I started a ten day course of antibiotics, which had no effect. In February, I tried some Clariton-D, which greatly helped the chest congestion, but had some side effects. In March, I switched to the generic antihistamine, Ceterizine Hydrochoride, which initially was effective in controlling nighttime congestion, and also allowed the Clariton side effects to fade out. But the CH was a short-lived remedy, and night nasal congestion became severe, waking and keeping me up. The wet cough worsened. I was a mess! But the worst was yet to come.
On March 8, Loni and I set out on our usual morning constitutional. I didn’t get far. I started having difficulty breathing and began gasping. We made it home, but sitting for a while didn’t help any. Off to my G.P., who’s right here in town, thank goodness. I looked and sounded sufficiently bad that they rushed me right in. He promptly put me on a nebulizer and that started opening things up and I was breathing o.k. in about ten minutes. Tentative diagnosis was some sort of adult sudden-onset allergic reaction. He prescribed a rescue inhaler to use several times a day (Xopenex), which I started using that afternoon.
The inhaler seemed to be working fine. I met with a pulmonary specialist and went through the pulmonary function tests, which showed things mostly within normal ranges, even though I still didn’t feel normal. Cue the ominous music.
On April 3, just before midnight, I began having severe breathing difficulty despite taking two doses of the Xopenex in quick succession. I woke Loni, and managed to get out that we needed to get to the E.R. right away. I’m barely sucking air despite great laboring. We threw on clothes and took off to Santa Monica Hospital, which is now part of the UCLA system, and is the nearest E.R. All I could do was collapse in a chair while Loni urged the intake clerk into action. As with most E.R.’s, the place had plenty of patients, but none were making quite the death rattle sounds that were coming out of me. Even so, it was another ten minutes before I saw anyone. First thing the nurse did was to take my pulse ox level. That shot her out of her chair and off to find the chief attending.
A little background. Normal pulse ox is about 98% or better. Impaired breathing begins at about 95%. Respiratory failure is below 90%.
I was at 77% and falling. Not good.
The doc immediately put me on a course of nebulizer; no effect; then a second course along with a steroid drip. In the background I could hear him alerting a team to prepare for intubation. Oh, crap. Hey, I’ve seen enough ER on t.v. to know that’s not a good thing. At this point, however, I didn’t care. Fortunately, the second round of nebulizer and the steroids starting to reverse the numbers, and my ox levels began to rise, albeit slowly over the next two hours.
Unfortunately, one of the dangers of these symptoms is that I might have thrown a clot, so CT scans are necessary to rule it out. Now, I had more than my lifetime’s share of radiation back in the cancer days, so I wasn’t too happy about this, but they were insistent. The scans came back all clear, and I was discharged in the morning with prescriptions for more inhalers and a nebulizer solution for if/when I felt things closing down. The discharge diagnosis was chronic asthmatic bronchitis. Okayyy, if you say so.
A follow-up the next week with my GP and he prescribed a twice-daily powder inhaler, Advair 250/50. Anyone who watches the evening national news undoubtedly has seen ads for this stuff. So, I begin taking it. Yee gods is it expensive. The “list price” that allegedly is charged to my insurance is about $300 per month, but I doubt they pay that much. Once I started using this stuff, I could lay off the rescue inhalers unless needed for a crisis. Not sure what crisis dictates the inhaler and which calls for the nebulizer. So far, I haven’t had to use either since starting the Advair. Out of the woods? Not by a long shot.
Unfortunately, despite all these drugs, the nose continued to run, and the night congestion got progressively worse until both sides began to stop up again, preventing sleep. In late April the pulmonary doc prescribed some HCl nasal spray, but it didn’t seem to have any beneficial effect, and I quit using it after a few days. I was getting exhausted from sleep deprivation.
Timing is everything. It’s now May, and on the 7th we boarded Southwest to fly to Indianapolis for Mom’s 90th birthday, which already has happened, but to celebrate it with my sibs and other family on Mother’s Day. Flying with a congested head is not the brightest thing in the world, but whattya gonna do? Well, hurt, for one thing. The pressure in my head was horrible, especially on descent. I couldn’t clear my head for two hours after landing, and couldn’t hear virtually a thing that whole time. Totally plugged. Sleeping wasn’t any better, maybe 2 hours a night at best. Still, on Saturday the 11th, we held Mom’s party at a local restaurant and everyone had a great time, so I’m glad we went. I’ll blog about that separately. That night, I actually fell asleep for several hours, waking at 3:00. I wasn’t able to fall back to sleep, as I couldn’t breathe properly.
Then, all weirdness broke loose. At about 5 AM, I felt like my chest and abdomen were roiling, churning. My body temperature seemed to fluctuate from hot to cold. I was alternately throwing covers off and on, and felt I had to constantly keep moving around. I got a welling sensation, like rising blood pressure, in my chest and head and started thrashing about. I tried to stand but was disoriented and collapsed back on the bed. My legs and arms started trembling and shaking, and a muscle just below my left clavicle
Once we got there I was pretty much settled down, but feeling exhausted. Again, they wanted to do CT scans for clots, but I explained my history and the recent scans. The ER doc wasn’t happy, ran some more tests, and said that an elevated D-dimer (say what?) reading indicated the need for a scan for clots. I agreed on one condition: that in addition to the chest scan that they also do one of my head to find out what might be going on with the congestion. He agreed.
Well, the chest scan, of course, was negative, but the head scan had the doc shaking his head. He was in his mid-forties, not a rookie, and he said he’d never seen a worse case of sinusitis in his career. Apparently mine was massive, in every possible cavity through out. His discharge diagnosis was acute sinusitis, and he prescribed a ten-day dose of a broad-spectrum “super” antibiotic, Augmentin, and use of the nasal spray, Nasonex.
I started the antibiotics, and tried the Nasonex, but the latter didn’t seem to do anything, so I discontinued after a couple of days. What I didn’t know then, and not until recently, and which nobody bothered to tell me, was that these nasal sprays were not intended for quick-acting relief, but took one to three weeks (!) or so to kick in. What we have here is a failure to communicate.
I still wasn’t sleeping, and indeed had a return of the shaking symptoms the next couple of nights, although much more subdued. I’m feeling generally lousy, fatigued, and slightly nauseous. This will be a fun flight back home. Arriving back in L.A., I had the same severe head congestion upon landing and went deaf again for an hour or so. I went off to my doc and got a prescription for sleeping pills, Lunestra for a few days (not covered by insurance), then Ambien. These both do a fine job of knocking me out, but I feel lousy the following day. My doc decided to double the original ten-day course of Augmentin, so that continued, much to my distress. He did opine that my travails in Indy sounded like the classic symptoms of a panic attack. Oh, swell. The good news is, an attack won’t kill you. The bad news is that, while one is going on, you feel you’re gonna die.
The Augmentin, being a broad-spectrum antibiotic, doesn’t discriminate between the bad bugs and the good. The end result was that it destroyed all the flora in my gut, and made digestion a very painful process. I felt terrible pressure in my stomach almost constantly. I ended up on the floor, curled into a ball, many times over the 20-day course of these pills, and for several weeks thereafter. On June 1, I took my last one, and went back to see my GP. He asked how long I had lasted on the Augmentin. I was puzzled, but said I did the whole 20 days. He was surprised, and said I was his only patient who had ever stayed the course. I wish I hadn’t.
Because, guess what? They had absolutely no effect on my sinusitis. They only made me more miserable. Time for surgery.
I contacted my ENT who took out half my thyroid several years ago, and he managed to book me in fairly quickly for a July 12 operation. However, this would be a computer-aided surgery that would require another CAT scan to “map things out.” That would have to be preceded by a round of steroids to reduce inflammation and allow the CAT to get a good view. All this took up the rest of June. In early July, I had to go another five days of steroids leading up to the operation, again to reduce swelling.
The big day arrives and we get up at 0-dark:thirty and schlep on over to the new outpatient surgical center across from Santa Monica Hospital. A very nice, modern facility for operations not expected to require an overnight stay. Fine by me. My last hospital stay with the screaming roommate was enough for a lifetime.
I did the usual prep nonsense, donning the impossible-to-close paper gown, getting fitted with a lunchroom-lady hair cap, and meeting a host of nurses and docs taking vitals and getting me to sign my life away on various forms. The most interesting of these folks was my gas-passer, who’s nametag, I kid you not, bore the moniker “Ace.” Now, are you gonna trust a doc who calls himself “Ace?” I made sure he’d gotten plenty of sleep, knew how thin I was for his dosage calculations, and generally tried to make sure he was focused. My ENT popped in just as they were giving me something to calm down (a bit of panic setting in?), smiling that “not a care in the world” grin of his, and pretty soon we were wheeling off to the O.R. There we encountered half a dozen personnel, some of whom were trying to fix a piece of equipment. Say, what? I didn’t have long to worry, as someone turned a valve and I faded away to the longest sleep I’d had in many months. Intubated at last.
So, what did they do? Glad you asked. Image guided endoscopic:
Left and right total ethmoidectomy; right middle meatal and left maxillary antrostomies with removal of soft tissue; left and right sphenoid sinusotomy; left and right frontal sinusotomy; and bilateral inferior turbinate reduction.
Whew! Basically, they roto-rootered the impacted material in every sinus cavity, vacuumed out the debris, and enlarged the drainage passages. After that, I should have been truly hollow-headed. Alas, the surgical process itself causes bleeding and swelling which quickly puts one back in the “stuffed head” situation all over again. And, it can take eight weeks for the swelling to subside. Fortunately, I didn’t incur any facial swelling or bruising, so not much was visible from outside. The sinus contents were reviewed by the pathologist and the final diagnosis was “chronic sinusitis, allergic type.” Not quite sure what to make of the “allergic” designation. To what??
As I write this, I am seven weeks post-surgery. I’d like to say I feel a lot better, but I don’t. Still lots of thick discharge, and at night my nasal tissues swell up on one (good nights) or both (bad) sides, impairing breathing, and preventing sleep. After several months of relying on Ambien, I’m trying to wean off the stuff as I feel lousy the day after, and the sleep never seems restorative, just being comatose. But it’s tough to quit. Without the pill I get very little sleep. Twice-daily saline washes provide only temporary (an hour or so) relief.
Where to from here? Wish I knew. If the Nasonex doesn’t come through, we’ll have to see about seeing an allergist to determine the root cause (if, indeed, it is allergy-based). Maybe more (ugh) antibiotics. It’s all pretty discouraging at this point. I had envisioned the surgery as the cure-all; now it looks like it’s only a first step. Looks like there are a few more curves in the road back.
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