Imperfect Design for Imperfect Patients

Multiple times a day, without fail, I show up and have some kind of interaction with an asthma inhaler.

Whether or not any medication actually makes it to my lungs is a whole different metric.

The last few days the asthma has been a cranky monkey humping my back.

Today I finally thought to look at the counter. Zero and who knows for how long.

Sigh.

If I were in charge, I would probably hire new product design people. Zero should never sneak up on an asthmatic.

I do check the counter, but it's still very easy to miss when the inhaler is empty. It's not readily visible. You have to remember to look, which is just asking for trouble as I'm absentminded to the point of being senile at times.

Advair has a decent counter design. It's placed so that it's visible every time you use the inhaler.

But I can't use Advair. It messes with my heart. So I use other inhalers, that essentially had the B team of product design people.

Basically the inhaler design assumes the patient is perfect and never has a lapse in memory.

Yeah, right.

Shock and Awe

Saw my primary doc. Nice person. Listens really well and we seem to dovetail a lot in our thinking. So far.

While they aren't super concerned either about the nagging thing I finally decided to be sure was nothing, we are going to run a few tests.

Here's hoping I am a hypochondriac on this one.

The funny part of the visit was, we got side-tracked by the adrenal stuff. And my doc was horrified, absolutely horrified, to hear what I'm doing with prednisone.

Which is basically taking whatever dose I think will help with zero input from the endo and no lab work to provide empirical data to determine if what I'm doing is the right thing to do.

Oh, hahahahaha.

Isn't that funny?

In a what-the-f*ck-are-some-doctors-thinking way?

It was kind of funny to see the pcp work a bit to maintain their demeanor, they almost let it slip, they were so shocked by my free-range patient status.

So I got a referral to the endo I was trying to get into see a few weeks? a few months? ago. I couldn't make an appointment without a referring physician. My insurance does not require a referral but the Endo. Dept. does.

It's "department policy."

How ironic. Who saw that twist in access to health care coming? Not me!

But now I have a referral and they have to give me an appointment. So take your policy and *bleeeeeeeeeeeeep*.

As for the asthma, it's been really bitchy since yesterday and my PCP was all up in arms about why I wasn't taking Pulmicort and why I wasn't doing a flu shot.

Okay, for the record, I do the flu shot all the time, but this year I don't like the shot. I have some issues with it because of the H1N1 component and that's as deep as I want to go on that issue. It's not a stance I necessarily endorse for anyone else but me in my particular situation.

The science of vaccines is solid. Vaccines work. The implementation though is full of problems.

As for the Pulmicort, all I could say was "I don't care if I can breathe, I want my adrenal glands back and I'm not going to enable the suppression unless I have to. The priority is the adrenal glands."

Also, I am not seriously sick. This is not serious asthma. It's uncomfortable and unpleasant but not dangerous. It is very likely that when I went down to 2mg I hit the threshold where the lack of steroid was going to trigger my asthma.

So yes, when I woke up today I could not breathe. When I talked, I panted. I had cramps all through my rib cage. However, with the rescue inhaler, by the time I saw the doc, all that had passed and I had good air movement.

When they saw the good air movement and couldn't hear a single solitary wheeze, they backed off on the 'Why aren't you taking care of your asthma' lecture.

Asthma can still surprise me, but I feel like I know my brand of asthma pretty well. If things get serious I will take care of it, but right now, I'm not sick enough for anything more than a rescue inhaler.

Finally! Someone Who Wishes More Patients Were Like Me

I love my pulmonologist.

She loves me.

*swoon*

She wishes more patients were like me. No she really said that.

And I don't think it's just because I brought her chocolate.

If only she could be cloned...

It was a heck of an appointment. First it was canceled, then moved to later in the day after another (routine scheduled months ago) appointment. The good thing about this, I had child care for the toddler and she stayed home. On the down side, I ended up walking 1/4+ mile--to appointment 1, then to the ER to drop of the thank you gift, then back outside and to the pulmonologist.

Of course, since no one can smoke inside, everyone was out smoking on the sidewalk so I was holding my breathe throughout the nicotine gauntlet. Praying the lungs were not on a hair trigger because if they were, I would so be going back to the ER and, this time, not to say thank you.

By the time I got to the pulmonologist's office, I was bushed. Absolutely wiped. The muscles at the bottom of my rib cage were spasming and my legs were shaking. Good thing I made a list because my brain had gone on vacation.

So here are the results...

1. All meds ordered. I'm already on the highest dose Symbicort and didn't know it. Whoops.

2. We didn't get to building a better nebulizer treatment, but I am going to go to an asthma education session and get a new asthma action plan(the last one was from 1997). Which I need. I truly don't get so sick that often. My day-to-day asthma management skills are stellar, the mild exacerbation skills are stellar, but I am clueless any more when it comes to the more severe asthma.

I'll revisit the whole Atrovent at home thing at our next appointment if I need to. It kind of fell by the wayside.

3.I really was sick. I did the reasonable thing considering all that I had done at home without improvement. I probably could not have stayed out of the ER no matter what I did. This helps me let go of the feeling of failure.

4.My peak flow should come back. Sometimes it doesn't, but she feels I'll eventually get there.

5.We adjusted the steroids and increased the taper to avoid Cushings. Anything over a week needs a slower taper than what I had according to the pulmonologist so my instincts were spot on with that.

6.Yes I have asthma. I probably have vocal cord dysfunction too (damage from chronic laryngitis due to constant infections). It's actually really common to have both, but since I only ever show up complaining of being sick when I have asthma it's kind of moot. And she was a little ticked at the other doc. I shared with her it undermines my confidence in myself when I run into this anti-asthma mentality. (I swear, I'm going to get a copy of my positive methacholine challenge and tattoo the damn thing on my chest.)

The problem with the normal pulmonary function tests is this, the tests that show a "strong bronchodilator response consistent with asthma" are hard copy. They aren't in the system. So I'm basically screwed by something as simple as record keeping. Which sucks. The normal pulmonary function tests aren't the important ones but they are only ones showing in the system. They are all notated as 'asthma responds well to therapy' in the computer.

7.My immune system should start coming back once the prednisone dose is at 20mg or below.

8. With regards to exercise, she said I should aim for regular daily activity and then s-l-o-w-l-y work my way up from there. Walk one block. Then two. Don't worry about the peak flow meter in relation to exercise right now, which is what I normally do. If I'm not 100% I usually avoid exercise until I feel better or do something very mild. With the peak flow being so inconsistent and still lower than normal, I was hesitant to do much.

The only thing, I'm not sure I'm quite at 100% on normal activity yet. Maybe 70%???? The other problem is there's a disconnect between cause and effect. For example, overdoing it at 9am may not produce symptoms until 1am. I don't necessarily have immediate feedback from the asthma, so I am a little nervous about pushing things. The rules and norms of my body have changed and I didn't get my copy of the rulebook.

The walking I did today will either set me back or help strengthen me and move me forward. I have no idea how it will 'hit' the lungs until sometime after midnight tonight.

Well, poop, I just took a deep breath and there's gunk. Damn. This had been a gunk free and wheeze free day up until now.

9.The lung growth is very small and not big enough for biopsy. So the good news, whatever it is, we caught it early, the bad news, it needs time to fester (my word, not hers!). Imaging it too soon would be unproductive, but she did say we could do a CT scan in December to take advantage of the fact that I've met the super high deductible on our crappy insurance.

My father is convinced I'm going to die if I don't get a CT sooner. I would say my father would not have the greatest bed side manner if he were a doctor. He wouldn't see me a second time, that's for sure.

10. I have scarring in the lungs. I had atelectasis which I wonder if that is why I'm finding recovery so slow? I don't think I've had atelectasis before. I don't know how severe it was or to what degree--I will ask next time about it.

Crap, I should've gotten a copy of the CT and x-ray reports saying this. I'm trying to collect the important pieces of paper so I have them if I need them. Since my credibility consistently seems to be so poor, I thought I'd keep a notebook and bring it to appointments with new docs in the future. They can peruse the hard data of my medical profile at their leisure.

11. The low blood pressure was more than likely due to being sick. I was high at the doctor's office (but was still gasping for breath after walking more than I have in 3 weeks when they measured, plus I was holding my breathe there for quite a while). I am mostly low at home, but have had a higher reading here and there. I am watching it and will get in touch with the PCP if necessary. I didn't have any high readings at all until the prednisone taper started.

12.I lost another pound. I thought it would be more since my pants are basically falling off of me, but a pound lost is a pound lost. Apparently sitting on my ass is an effective way to lose weight. That's the beauty of low carb eating.