Fanatical Apathy · Cancer n’ Me

Adam Felber (ace WWDTM panelist) had a less than positive experience with the totally disorganized and indifferent crap that is the American health care system the other day. He’s happy to say that he has not-cancer! Hurray! And he had pretty much diagnosed himself correctly via WebMD, but that didn’t stop him from thinking that The Cancer had invaded his lymph nodes, whatever those are.

As it happens, I also had a less-than-satisfactory experience with my health care provider Tuesday, and I had also pretty much diagnosed myself via Google and various diagnosed myself sites.

Remember all those posts starting in February where I complained about being sick and coughing and touring the pharmacies of the Western Caribbean?

Yeah. This has been going on since February 28th. Coughing my head off, losing my voice, getting better, relapsing. It was a big worry for Holy Week whether I’d be able to sing or not.

The whole long boring story of my stuffy bluggy hacking coughing travails is in the extended entry…

I was feeling pretty good on Sunday; the cough was tapering off, my voice was okay, I felt better at last. All my life, I’ve struggled with “winter cough” that would often last for weeks or months, and even though I know better, and know that I can shorten it, my tendency is to not bother seeing the doctor because “it’s just a cough/allergies/asthma.”

Well, Monday it blew up again, and I was sicker than ever. My doctor has a very inflexible attitude toward scheduling – basically, you can see him on Tuesdays and Fridays in the suburb we used to live in, and you can see him on Mondays and Thursdays in a suburb quite far to the east, but you can’t talk to him about your illness when he’s at the other office or schedule an appointment at the nearby one. because the patient files and appointment books are not carried from one office to the other (I understand whyhe wouldn’t digitize an abstract of his patient files for portability, but I don’t understand why he doesn’t use scheduling software available from both locations).

So, I had to wait until Tuesday morning to call for an appointment. At least I was able to get in relatively early, but my coughing got worse and worse during the appointment, and the doctor’s staff was part of the problem.

Basically, the cough is a reflex that’s tied to asthma, post-nasal drip (which I have pretty much constantly due to allergies), sinus infections (which blow up when something makes my nose run more than usual, again allergy-related) and various triggers (dust, strong perfumes). There is also supposedly a tie-in with gastro-esophageal reflux disease (GERD) according to those website. More on that later.

I’m constantly taking allergy medication, by the way, and if I went off of the Zyrtec I take daily, my nose and eyes would be itchy and watery all the time (especially at work and in the morning).

I went to work first, advised my supervisor I’d be leaving in the midmorning for a doctor’s appointment, and got myself to the doc’s office a few minutes early. There was no one in the waiting room when I got there, and someone came and got me within a couple of minutes. This was a nurse I hadn’t seen before – she spoke with a little accent, but I couldn’t place it. She took my weight and temperature (it was high) and then sent me off to an exam room for the next part, which is “nurse takes blood pressure beforeDoctor comes in.”

This is one of the weirdly annoying things about this office – the scheduling/front office nurses (there are at least two or three who run the front office) all call the guy “Doctor” in slightly reverent tones, as if that was one of the names of God. Most of the back office, exam nurses, I notice, don’t do this.

I wait a bit, and my doctor breezes in. He schedules things very tightly, and ideally for him it’s all a quick consult, write some scrips, and hand off to the practical nurses who actually do all the tests. For me, though, he usually has to come back in and draw my blood, because I’m a tough draw.

We talk about the cough, allergies, nasal stuff. He peeks in ears and nose and says “Got some infection there.” Oh. Okay. I hadn’t really felt anything like a sinus infection, but I know they can be kind of stealthy and lurk-y. I forgot to ask him about the gastric reflux stuff, though. This will become significant later in the day (FORESHADOWING! It’s a blatant clue, innit?). As he leaves, he grabs a rolled up exam robe outof a drawerand tells me to disrobe. I mention to him (as I have done numerous times before) that his robes are never big enough for me.

I am not huge, people! I have a chunky butt and thighs, yes. But I am at the large end of average, not extra large or friggin’ huge. I know that he’s got some patients bigger around than I am, and I feel bad for them having to put on a robe that won’t come close to closing in the front (for exams, you wear these things with the opening in the front). As it is, it barely comes together over my hips, but that takes all the excess up and it gaps open over my thighs.

Then the torture begins. The doc always wants to know just how insufficient my ability to breathe is, so he has someone do a “puff test” which annoys the hell out of me, because the meter thing has to be held just so or it messes up the test, and blowing into it there’s nothing to push against, so I always blow everything in my lungs out very quickly, leaving absolutely nothing while the nurse stands there and says “more, more, more.” Also, they often don’t give me time to take a deep breath, they just watchthe display and say “NOW!”

The nurse with the accent is elected to come in and torture me. The first 3 attempts, I either go into a coughing fit right off, or run out of air and wave the thing off, saying “I’ve got nothing left.” So she keeps repeating and repeating and repeating the test.

Which only makes me cough more. It’s worse than ever, because it’s being forced from me. I start to get very, very tired of the whole process.

All during this, there are voices out in the hall and someone says something about a patient logjam “and where are we going to put people” to some laughter. The nurse said something about doing an EKG next; can’t remember for sure, but I think one of the other exam nurses, another new one who seemed jolly and kindly, started to come in with the machine, but we weren’t done with the damn puff test.

Then the horrible thing happens. As I’m leaning over to the side, tired and coughing uncontrollably, I feel a whole lot of “seepage.” This is something that happens when I’ve been having the “winter asthma cough” – it was a problem on the vacation because I kept having to change pants and rinse stuff out in the sink. Horrible. I may have to think about getting pads for this the next time around. According to the various health websites I’ve been on, it’s common with this type of chronic cough, but it’s also anindicator that a cough is something more like whooping cough, too. Which I don’t have this time, but did have last year, and it happened then, too.

Frantically, I stop the test, tell the nurses I have to get to the bathroom RIGHT NOW, and I can’t even go into the hall because the robe doesn’t cover me. I apologize and hope to hell I haven’t left a wet spot on the exam table. The new nurse checks out the door and says no one is in the hall, the coast is clear. I hustle across, coughing and trying to hold myself together in various ways, and make it to the bathroom. At my lowest point, I shed a few tears of self-pity and clean myself up, telling myselfnot to be such a big baby. That’s when the exam nurse pops her head in the door and reminds me to get a urine sample.

“Yes, yes, yes. I will get you your urine sample,” I snapped, outraged at the intrusion.

Once again, I thought how David and I have been meaning to change doctors for years – we’re used to this guy, but his quality of care is only fair to middling, and the location and scheduling issues aren’t going to change. Also, I’d gotten a vibe from his front-office nurses in the past that I’m not their favorite kind of patient, because I’m only in when I’m sick, and rarely in on a routine in-and-out exam. In other words, I throw them off their carefully controlled plans for Doctor’s day.

Also, I suspect that Doctor wants to see me much more often than would be warranted by my current health needs, only because that increases the number of times he can bill my insurance company. He seems to want to see me every friggin’ month, which I won’t do because I’m only 49 and for the most part I’m not sick. I’ve asked him point-blank if there’s something seriously wrong that he’s monitoring that I should know about, and he hems and haws and says he wants to keep an eye on my blood work (something elsehe can bill for, by the way). He keeps me on a short leash, prescription-wise; the insurance company will only allow a 90-day max on the amount of my blood pressure medication, water pills, and Zyrtec that I can get at a time, but he won’t put a 1-refill or 2-refill notation on my scrips, so the pharmacy always has to call him for a refill (and remember that kooky schedule).

I finished up in the bathroom and went back across, and we still weren’t done with the puff test. More puffing, more coughing. This time, the nurse gave me an inhaler to use first, to see if there was improvement. There was, and I did the puff test 5 or 6 more times, until I was pretty much exhausted.

This is when the interesting and really outrageous thing happened. One of the front office nurses came in, who has actually been an exam room nurse for me previously, and quietly chastizes the nurse with the accent. She tells her that they will not be doing an EKG test on me in spite of what the exam nurse had said earlier, “because when they’re sick we don’t do the routine tests on them. We just just get them in and out with their scrips as quickly as possible. They throw the schedule off andnow we’re half an hour behind.”

Right in front of me, she said this!

The exam nurse looked embarassed and a little dubious. I was busy coughing, and also thinking that this was the last straw as far as “Doctor” and his merry maids were concerned – I’ve had it with them.

A couple more puffs. More coughing.

“Please tell me that’s the last time,” I said from my half-reclining position after the last coughing fit. “I’m sorry, but your perfume is starting to make me cough more.” She assured me that we were finally done, apologized, and left quickly.

I hate that damn puff test. I just don’t know if I should blow everything out all at once, which makes me cough, or if I should exhale with more control. The apparatus has nothing to “push” against when you exhale.

Someone else came into the exam room to do the blood test – the “kindly” exam nurse from before. She starts to set me up, brings me some water to hydrate me a little better, chides me for not drinking water continuously, and generally mothers me a little. It’s nice after what I’ve just been through. Another student nurse is there to observe. The water helps the coughs, as by then my mouth and throat were dry.

During this, the previous exam nurse pushes the EKG machine in the door without coming completely into the room. I explained about her perfume and said I felt bad about having to say something, that it was an asthma trigger and a big problem for me at work. They both said not to worry about it and made sympathetic noises.

Then I said “I thought we weren’t going to do an EKG? One of the other nurses came in and said you guys were running behind.”

The kindly nurse pooh-poohed that in a comforting way and said something about “the front-office staff don’t really know about patient care, they’re always so concerned with their scheduling.” She said the EKG was indicated for my current complaint, which I happened to know was true based on my web reading – sometimes a persistent cough is because of an underlying heart ailment, and the EKG can confirm or rule that out. I was all for ruling it out – before I found that article online, I thought the EKGs I’d alwaysget on my previous visits were just another billable boondoggle. But now I think the times I got the EKG were the times when I was having coughing episodes and not routine exams.

They tried with a crook-of-the-elbow vein, but those rarely work for me; I explained that they usually had to go with a vein on the back of my right hand, so she got out a butterfly needle. The kindly nurse tried it herself, but couldn’t get in and called in the doc, who has a knack for it. I apologized for my crappy veins and lack of hydration again, it’s kind of a theme between Doc and me (actually, I read somewhere that redheads tend to be difficult people to inject intravenously or get blood from). He wroteupsome quick scrips for my routine medication and also for some of the stuff to get me over the current hump. I again forgot to mention the GE reflux connection in the stuff I had been reading (Dunh dunh dunnnnnh!).

Then the doc left again and they set me up with the EKG leads. The kindly nurse and I talked about the inadequate coverage offered by the robes – she was also a woman of size and we were sort of hitting it off over the whole deal. Test done, she put the printout in the file for the doc’s final appearance (it’s like a dance – he flits from room to room while the nurses do the routine tests).

Doc came back in, EKG seemed to be satisfactory (which has been a bone of contention in the past, because his machine gave a false “bad” reading once). I told him that being sick for so long was really frustrating, because I’d been working out so consistently and had lost weight back in January and February. He added a scrip or two to my fistfull, and added that he wanted to see me in a week. Well, okay, he wants to see if the antibiotic has done its job (the same one as last year, the “Zip Pack”).

And I was free to go back to work. Off I went.

Now the fun part begins. Earlier in the morning, I had taken a dose of this over-the-counter cough syrup called Delsym that I picked up at Walgreen’s Monday night. I also bought the biggest bag of cough drops they had. I had chosen this brand over the Robitussin that had worked well for me in the Caribbean because I noticed that this Delsym stuff was the only one that didn’t have some form of saccharin in it (Remember, I’m allergicto saccharin). Although I hadn’t reacted to it during the vacation, better safe than sorry (and maybe the Robitussin I bought in Tortola was formulated differently).

This Delsym stuff knocks me out, but good. It apparently takes a few hours to really kick in, and when it did, I was a little more than halfway through my work day. I got as much done and as many calls taken as I could, but started coughing uncontrollably again. Plus I was starting to feel a little groggy and wondered about being able to drive. So I took off for home, went upstairs, and crawled into bed. When I turned on my back with my head propped up, another coughing fit started.

It was at this point that the “gastro-esophageal reflux” aspect of my suite of symptoms manifested. In spades.

Ugh.

It was incredibly yukky and disgusting, too. I made it to the bathroom, but only refrained from spewing on the way from great force of will. Basically, I had to hold it until I could get there.

Ugh. Ugh, ugh, ugh.

That went on for a while – there is nothing less fun than dry heaves and wracking coughs – and eventually I was able to crawl back into bed and feel very, very sorry for myself.

David got home a couple of hours later, having picked up my prescriptions on the way.

That night was another long, sleepless one, and I couldn’t get my mind to shut off. I kept going over and over stuff – fever dreams, really. Most of the night, I was “working records” in my head, half asleep and half dreaming, one after another. Also, kept hearing bits and pieces of the music we’ve done over and over again. Every thirty minutes, I’d cough hard enough to have to get up and go to the bathroom, waking David up. I ached, too, and took some ibuprofen. About an hour after that, I broke into a big sweat,so I must have been running a fever.

Eventually, I moved downstairs and spent the rest of the night on the family room couch.

Yesterday, I stayed home from work and had already laid the groundwork for staying home today, and I concentrated on taking the array of asthma and cough medications, resting, listening to NPR, and reading. I still had the fever so took more ibuprofen, and so forth. Felt wonderful after a hot shower, though. Meanwhile, outside it was FRIGGIN SNOWING and SLEETING ALL FRIGGIN DAY, what a revolting development. It’s friggin APRIL, man. It was a good day to be home and not be running around in the wet snowy sleetycold, but still. And all day long, one of the major supporters of WBEZ was Scott’s Turf Builder. Do they think we’re optimists, with crazy weather like this?

Last night, I made up a better “bed” on the couch in the living room and although I had a few episodes of “cough and run to the potty,” they weren’t as frequent. I actually slept between 1am and 4am, a new record. Slept some more until I heard the clock radio go off upstairs, and for several hours more after David left.

Today, I felt a little better and decided to skip the Delsym for the day. Kept doing all the asthma and decongestant stuff, though. Riley kept me company and made a cozy little nest for himself amongst my “bedclothes” on the couch. He’d started out there, cuddled behind my knees, and stayed there after I’d gotten up and actually put some clothes on (I’ve been wearing sweats and nightgowns and my “cozy” bathrobe for days now).

In fact, I felt well enough to go out and pull off a PADS laundry run late in the afternoon, only because there was no one else available. I thought I’d just try to get the first part done, the pickup. To my dismay, I found 10 big bags of soiled laundry, a pretty big load. There were 7 clean sets left, and the log sheet said “need 30.” Unsure whether they meant “a total of 30” or “30 additional sets,” I decided to head off to the hospital to try to make the switch. When I got there, no one was around,as usual, to help. I dropped off the dirty load at the bottom of the ramp and went up to the dock to start hauling sets. Usually, I just carry 3 or 4 sets at a time – they’re plastic-wrapped bundles and weigh several pounds each – but I was hoping to avoid making 9 or 10 trips up and down the ramp and working up more than a sweat than was necessary. When I got into the laundry dock, I found just one cart marked “PADS shelter” jammed in with several other carts full of pillows and soiled laundry, and it wasn’tas full (or heavy) as it usually is. So I maneuvered it around so I could get it out the door and down the ramp – not easy as one of the wheels was jammed and would go straight ahead only.

That made the difference, though. I loaded up the car with all 25 sets that were in the cart and took off for the Lutheran church where the shelter is for Friday nights. While there, some kids from the nearby high school were setting up for a classical music concert, and I rode up in the elevator with the cart with a girl hauling a double bass. That made for a slightly surreal ending to the day. I left a note on the laundry log indicating that I’d brought back 25 sets, all the hospital had. Hope they meant “atotal of 30” because they’ll have more than enough; if they truly meant “30 additional sets” they may be short 5 sets.

Hope it wasn’t too stupid of me to do all that running around and sweating in the cold. I’m planning on going in to work tomorrow, but that depends on whether I get some sleep tonight.

And sleeping starts in about 10 minutes. Good night.