January 16, 2014

Life After Breath

Post-transplant day 37. Pulmonary rehab #16.  Life After Breath.

I can breathe again.

So now....what?
So NOW what??
So!  Now what?

Actors rehearse their lines with emphasis on different words to see how things play out; how they sound and feel, and which option works best for telling the tale.  Similarly, up to now, I could mentally rehearse the possible paths in front of me, knowing I'd be heading down this fork or that fork and the more mental rehearsal of the possibilities, the better.

But I'm unprepared for the this advent: the end of the trail.

Let me explain.  For over three years, this transplant journey has been about planning; about learning all the things that could happen, in addition to the things that WILL happen.  But now almost all of those things have come to pass or have gone past me without becoming part of my tale.  The waiting happened, the preparation, the pre-tx rehab, getting all my test numbers just right.  Getting listed, and waiting and waiting and waiting.  THE TRANSPLANT.  The immediate followup care in the hospital and the few weeks after.  The first month out bronch w/ biopsies.  The rehab post-transplant.

But now those rehearsal options and known branches of the future have been lived or not lived and I am running out of path.  My foresight is failing me.  Now the path gets more diffuse, as my particular trail has been trodden by fewer people.  From this point, the stories of those who have gone before me differentiate more and more, though admittedly retaining common themes.  And I am perhaps even losing the trace of my own path.  Now I'm just going on momentum.

Let's make this concrete.  Today I've received several pieces of information that both clarify and obscure the future. 

First, I thought I was doing well, but I found out that my bronch cultures are showing colonization with PA and Mycobacterium Chelonae.  My first post-transplant bumps in the road.  I'm super not thrilled about this.  I don't know how virulent these are, whether I am a danger to my transplanted friends or not, whether these are a danger to me or not.  The doctors don't seem to be in a panic - they haven't assigned any new meds.  Reynolds says I'll likely remain colonized by PA the rest of my life and we will handle flareups when they happen.  So...the days of my CF IVs aren't truly over, I guess.  And the MC will be better defined by a chest CT not being done until the 21st.  I'm told the MC is everywhere in the environment, even tap water, so it's no surprise to see it in my cultures.  But I am dismayed.

Second, I had a chat with my case coordinator at my insurance. There are some good indicators toward me getting a LINX approved.  When I mentioned that I've heard (from my surgeon) that Medicare has begun approving LINX and saw online from other patients that United HealthCare has begun approving LINX, she said that would be very helpful in getting my request approved.  Even more reassuring is that Duke University Medical Center became in-network to my insurance (rather than PPO) on December 1st!  That doesn't affect what I pay, but it does speak to the level of relationship between the two entities - the level of trust.  I hope this works in my favor.  But as of now, I have no knowledge of where in the filing/denial/appeals process we are or when my stomach surgery will be.  There's no timeline here.  I feel like I'm chasing a mirage that I'm required to catch.

Third, how well I am doing in regards to lung function and ability (if not in regards to lung cultures) was reinforced by a discussion with the respiratory therapist in charge of my chart at rehab.  She won't or can't give me a timeline for when I can try jogging again.  Some people say 6 weeks; she thinks 3 months.  I've asked my coordintaor to ask my doctor and surgeon.  I will follow their guidelines.  But for right now, I have no charted future there.

She also wants to graduate me next Friday, on what will be my 21st session, as I'm clearly restored to a highly functional status.  I'll spend my remaining days in Durham working out at the Center For Living, which has a larger gym, but which is not where friends Piper and Denise will be going.  I am going to try to bargain for some extra time at Croisdaile Pulmonary Rehab, so as to have some overlap with the girls.  I feel its important to support them in their first days back; but I also kind of need this for some kind of closure for myself.  Purely selfish.  A timeline is in place - but not one I'm real happy with - it will leave me without completion.

Of course, the girls themselves are another aspect of this existential crisis of unmapped, disappearing trail: Piper is waiting only for a couple of chest tubes to dry up, but there's no timetable in the world can predict when that will happen.  Best case scenario, she'll get out of the hospital Monday and perhaps she'll be back to Rehab Wednesday.  And Denise?  I'm not sure what's keeping her in ICU, to be honest.  She's walking laps there.  Can't speak yet, but that's not a requirement to go to stepdown.  Hell, patients have left stepdown and gone home (and back to rehab) with intact trachs!  I suspect her stay in stepdown will be short, as the majority of issues that have kept her in ICU and would keep her in stepdown have cleared up.  In fact, she's winning the chest-tube race against Piper, I believe.  I must check on her personally tomorrow and get some answers from the nurse.  I'd love to run into her attending or her surgeon and just press for a reasonable-case scenario type timeline. 

Ah, but there's the rub.  You can't put a timeline on ANY OF THIS.  That's not how medicine works.  Our bodies don't punch a timeclock, no matter how much the psyche DOES.  Of late, I have been asked repeatedly when I'm coming back to New York, when I can return to work for these or those people.... I just don't know!  I can't know!  The best I can predict is 8-12 more weeks.  Believe me, I would like nothing better than for LINX to be approved tomorrow, placed next week, me healed up fully and hitting FEV1 100% in a month, and Dr Reynolds saying I can move back at the end of February.  But that's an illusory and distracting piece of wishful thinking - inventing a map in my head of the terrain I'd like to travel, rather than the terrain I will travel.

Tonight, I am reminded that I am not, in fact, clairvoyant and I'm subject to forces beyond my control; that "now what?" may have only the paltriest details, none of them concrete; that "now what?" may be more impenetrable haze than crystal ball.  Tonight,  I can only wait...and walk....and wish.

1 comment:

cc said...

Hello!!! I am sooo happy to hear you received your transplant!!! So happy for you.
Cana Carter- UPMC Double Lung 01/29/2006