October 22, 2012

Jesus. Where was I...?

Ah, jesus.  Where was I? Time is moving on, inexorably.  Not slowly, either, and I forget where I was at, if not for the records I keep and the blog I...kinda keep.

Let me try to update you where things are at here.  This is, or was, primarily an exercise blog, with a focus on running.  But to be honest, I am not running much these days.  I am so miserable doing it, partly for lack of lung power, partly for yearning for days past when it was far, far easier and it was possible to run miles on end without having to walk, without running out of breath.  Or running beyond my breath, as I think of it now.

I am very focused on cycling, though, and will definitely post more about the bikes as time allows.  I have some great stories regarding some recent rides.  I haven't been blogging them because I've been filming them and making short YouTube videos.  (Which, reminder, I need to catch up on the last couple rides' worth.)  It is an exciting way to get around, certainly never boring, and I find it well within my dwindling capabilities for now. 

Oh wait... I'm sounding defeatist already.  "Dwindling capabilities."  Is the glass half-empty or half-full?  Or am I saying that the glass simply contains 50% of its maximum capacity - a simple statement of fact, with no judgement or emotion attached to it?

Let's recap the last several months, the last few rounds of IVs.  Let us recall that I have been dipping, during exacerbations, into FEV1 <25%, but recovering back to 35% or so.  But I haven't seen higher than 28% in several months, despite multiple courses of IVs.

These last two months have been a rude slap in my face, too.  At the top of September, I once again was more breathless, taking more albuterol, more phlegm, more coughing, losing weight - all signs of an exacerbation.  I ended up on IVs and orals, of course.  The IVs were tobramycin and ceftazadime.  However, about 10 days in, with little improvement, we had sputum results back which showed a recurrance of MRSA, which I haven't cultured in a couple of years.  So we switched from Ceftaz to Zosyn.  Zosyn is a hard medicine to take.  It knocked me down pretty badly, though thankfully no allergic reaction.  Just very, very tired.  A couple of weeks of that and things were beginning to improve palpably.  So, at 27 days of IVs, with another occluded huber needle (a problem with the manufacture of the external line portion of it, I believe), I DC'd the IVs.  (I only had one more day to go anyhow).

Unfortunately, I immediately got the flu!  Or something like it, though milder.  Viral, at any rate.  A Friday, Saturday, and Sunday lost to it.  Tylenol and fluids.  So...I start getting over that only to find my lungs - and the attendant lung infection - are back at square one.  Back in IVs territory, though my doctor and I agreed to just go with orals this time.  My doc also put me on prednisone taper #2 (the first being in September) and has kept me on 10mg all last weekend, aiming to see if I need to continue it long term.  I'm paying good attention to my nutrition - my diet and my pills.  Trying to get calories in.

My primary problem for the last couple of weeks now has been that I can't physically get the phlegm coughed up.  I have been exhausted by the end of a day of coughing, coughing, coughing; producing more or less phlegm as the gods decree.  Thankfully, the orals HAVE worked some magic and the amount of phlegm has gone down, along with the need to cough constantly.  But when I am coughing, it is difficult to move what's in there.  We joke about our phlegm being as thick as tapioca - but mine is! And my breathlessness has not decreased much.  I've been monitoring my SpO2 - my oxygen saturation - at various points during exercise, coughing, exertion, rest, etc.  I am sometimes alarmed by what I see, but I always bounce back in a few minutes of rest.

And I'm not even going to get into the multiple-times-daily lottery that my bowel movements have become, thanks to Zyvox.

So... what to do?  How to address this? How to get out of this rut?

I saw my doctor today.  It turned into a long meeting, including the consult of the nutritionist and the shri-- er, social worker.  And resulted in a lot of small changes to my meds.

The numbers are not encouraging right now.  My weight is now 117, putting my BMI below 19 for the first time in years.  Despite feeling better all weekend, actually, my PFTs are down.  Today's FEV1: 24%.  More alarming is that my FVC, or total lung volume, is down to 41%, from 52% at the top of September.  These are the numbers that concern me most.

Our plan of action is multiple.

1) For now, I'm starting on simple generic guaifensin, the active ingredient in Mucinex, in the hopes of thinning that phlegm.  I'm paying better attention to hydration, too, and increasing hypertonic saline.  (Though too much of that closes my lungs down again.)
2) In a week, I'll add N-acytlcysteine - also to help thin the mucous.  I don't mind adding these two OTC drugs in if they help me cough stuff up easier.
3) Continuing on 10mg pred daily.  My doctor hopes to taper it to 5 after a while.  We'll see.

4) Discontinuing the Zyvox oral antibiotic, but continuing on the cipro.  At least until I see her again next week.

5) Changing out the compounded tobramycin I inhale for colistin.  I was on colistin long ago and it caused bronchospasm, but perhaps I'll tolerate it better this time around.  
6) Diflucan for a week.  Because guess what's back?  Oh, yeah, baby, my mouth is a love-mosh-pit for thrush.
7)  Nystatin, too.  Because once I get a leg up on the thrush, it'd be nice to keep it at bay, which is not easy when you're on three steroids.  (Symbicort inhaler is the culprit here, even though I do swish with water after.  I'm also on nebulized Pulmicort and, now, the Evil White Candy.)

So.  Jesus -- where was I? 

And how can I get back there?