November 15, 2013

The beginning of the end

Pulmonary Rehab Day 29, end of Week 7.

In my writings and when talking to doctors, I've often used a slope metaphor for what's going on with me.  I've been likening my decline to sliding off a gravelly slope; concerned that a steep and abrupt cliff awaits me that that will spell my end.  Worried that the system can't respond fast enough to a sudden, steep decline in lung function to save my life.  Well, Cris meet cliff.  Cliff, Cris.

Let's back up to last week, when I had a hard time Thursday and Friday and throughout the weekend with tightness, hyperinflation, and breathlessness.  Chest congestion increasing.  Hyper-reactive lungs closing up when I inhale the medicines that are supposed to be helping.  But Monday and Tuesday were an improvement and I did well at rehab.  But back again to having a hard time mid-week and today.

The newest wrinkle now, it seems, is hypercapnia, or CO2 buildup.  This is difficult to measure and difficult to manage.  In clinic, they'll pull an ABG - arterial blood gas - and one of the results is a measure of how much CO2 one retains.  Only recently did that number go above normal for me.  Yesterday, though, there was a quite a jump.  (To can look up normative values here.)  My doctor didn't like that and rattled the bipap saber a bit, though I think we'll hold off a couple weeks in hopes I get a transplant first!  (I'm still sleeping well, after all, and oxygen sats are good all night.)

But you can't measure CO2 levels as you exercise, not very well; not with simple, practical means.  And so I'm left to feeling it out.  CO2 buildup causes a variety of effects, some of which I experience and some of which I don't.  I don't really get CO2 headaches, for instance.  But if you've ever held your breath to the point of blacking out, you may be familiar with how the world starts to go dark at the edges and vision doesn't stay synced with head movement.  There's also a feeling of breathlessness, of course, as CO2 levels are what drive our breathing mechanism.  I get mild tingling in my extremities as well as tremors.  All the while, my O2 can be just fine.  But any real exertion - my normal workout pace on the bike or walk for instance, or putting in a good set on the weight machine - kicks my CO2 levels up and I'm forced to slow down, even stop.  And rest.  And recovery has been taking longer and longer.

So my lungs have progressed to that point: where not only don't I have much volume, but also don't have effective gas-exchange properties.  This is a hard limit - there is no training to get past this.  I must continue rehab to the best of my ability and I must patiently await transplant.  But if I needed any clearer sign that these lungs are done, it's just been delivered.

Now, my current troubles aren't *all* about a sudden jump in CO2 retention.  I do have a lung infection brewing.  My doctor wanted to wait a week and see how I feel before ordering IV antibiotics, but I pointed to my PFTs (21% FEV1, 60% FVC) and noted that my CF pulmonologist in NY would not wait.  So we ordered up some IVs and I've had my first dose this evening already.  I am hopeful that the IVs will result in some better happenings at rehab and bridge me over 'til transplant.

A person can go a long time on lungs that are damaged, as long as they're still clearing out CO2 and bringing in O2, enough for the rest of the body. mine can't.  I'm having to retard even my supervised, prescribed exercise.  It is a hard thing to finally look this in the face.  I recall a moment back in August when I was watching my doctor type notes into the computer during our consult and he just routinely tapped out "end stage cystic fibrosis" and "respiratory failure".  I was shocked.  I hadn't applied those labels to myself yet.  But this CO2 thing makes those labels relevant and vivid.  It's like seeing but not seeing those signs at the Grand Canyon:  Danger. Steep Drop.  Stay Back From Edge. You don't think they apply to you, until you are scrambling at cliff's edge to keep from going over.

Tonight I'm reminded of that edge; because I'm clinging to it by my fingertips.

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