Recovery is speeding up

Post-transplant day 17, rehab #5.

I'd had a fairly lame start to my recovery, I feel, especially with the low-energy, low-ability 1st day back at rehab on Saturday. Pain has stalked me in varying degrees from large to immense, with only a few respites. In these 17 days, I have been made to appreciate what a near-death experience transplant really is, even when it goes well.

But mid-week everything changed for the better. Perhaps it is the normal course of recovery, perhaps it was the spirit of Christmas, perhaps it was the vicarious excitement of the surprise visit Denise Horgan got from her siblings, or perhaps it was the relief from enormous worry when Piper Beatty finally got her call on Christmas morning, but I slept better Wednesday and Thursday nights than I have since before transplant. Not well, mind you, but finally a couple hours of deep sleep.

I've had more energy to visit friends in ICU and stepdown. I continue to worry over them and encourage them to push themselves. I've needed a little less napping. And in rehab, I'm getting a little bit more flexible and faster each time.

But today something REALLY clicked. My pain was down far enough to simply power through it. And in the middle of floor class, I started getting pings from my phone in rapid sequence: texts from a woman whom I'd left a mere 90 minutes earlier still moderately sedated and vented! Now I was getting my phone blown up by Piper! And...she was bragging about some test or other. Worries gone. Relief enormous.

The rest of rehab went swimmingly and for the first time since transplant was able to turn in better than a lap a minute during the walk. And I get to move to heavier weights on Monday. And on my SpiroPD, just now, I upped my FEV1 to 63%!

Today I am reminded that we are all in this together, quite literally. When my friends do well, I do well. And, I believe, vice versa.

All I want for Christmas

Dear Santa,

I know I'm writing a little late, and perhaps I'm a little old, but the bell still rings for me and so I  write to ask you to bring me all that my heart desires this Christmas. 

Now, please don't see me as greedy or selfish.  I know my own gift has been bestowed upon me already.  A fortnight ago, at this moment, I was being given the gift of renewed life, thanks to the unblinking generosity of a donor and his family.  I have a lot of fight left in me.  I have dreams and ambitions and now another chance to make them happen.  And I will do them all for my donor as much as myself.

Maybe future Christmases would bring race wins, triathlon finishes, Tony awards, tenure positions -- but keep it all, Santa.  Keep it all and in exchange, just this one Christmas, please bring the one and only thing I want - all my heart desires - the one spindle upon which spin the platters of a dozen songs:  please bring Piper Beatty a new pair of lungs.

It kills me that I got the gift of life first, though she needs it more.  I've seen her Santa, her struggles and her pain and I know - as you must also - that there isn't enough time left to make this wish twice.

So bring on your best magic, sir.  Bring your scalpels and sutures and surgeons and nurses.  Bring your staples and chest tubes and IVs and gowns.  Bring FEES and bronchs and manometry and fundoplication, too, if you must.  But please, PLEASE, bring lungs for Piper!

Your obedient servant,
Cris Dopher
Duke lung transplantee #1400

Recovery begins in earnest

Post-tx Pulmonary Rehab Day 2:

Though I would like recovery to be brief, it is more likely to be a long haul. Baby steps. OK. Today's was a full rehab session, with all activities. And though I'd like to describe my pain and weakness in flowery ways, or perhaps just as literotically elucidate my strengths, I'll do neither. Rather, I look around and take stock.

Today's floor class was quite crowded, with more than a dozen people. Three of us (including myself) in chairs, because we're too weak to be on the floor just yet; me squirming against a heated backpad in hopes of some relief. I look around carefully and note those ahead of me on the path, who are farther along in recovery and doing well and spurring me forward. I see those who are behind me on the path, still on oxygen, struggling - yet physically stronger than I am at the moment.

Today, one participant lay beside me on her yoga mat who is quite uniquely both ahead of and behind me on the road to transplant. I've relied on her advice and survived - no, knocked this out of the ballpark - because of it. I only hope she'll take what advice I can give her about the immediate future. Oracle-like, she revealed the outlines of my odyssey. But now I can fill in the details for her. Thank you, Piper Beatty.

Lifting hand weights and doing leg raises with my comrade today reminded me of the constant state of flux we're in, where nothing can be taken for granted. Two weeks ago today I could have written in my own chart "here today, transplanted tomorrow". Tonight, I wish that for her.

Contemplating escape

Originally posted from my iPad...

6 am. Two failed ABGs. Now is about the point I begin to contemplate escaping from this gulag. No torture-ridden CIA hellhole could hold the wonders I've seen, nor the skills of the inquisitioners match the doctors' and nurses'.

I consider tunneling my way out, but have no equipment sturdier than my iPad with which to dig. Camouflage techniques are right out, as that would require a shower, shave, and obtaining scrubs.

Perhaps I can distract the guards by remotely triggering another patient's call button and then simply walking out. Ah, but what chance have I with my painfully slow gait, when one guard can notice me on her coffee break rounding the corner, nudge another guard 10 minutes later and say, "Hey, do you think he's making a break for it?"

First thoughts from stepdown

I am super tired and strung out because they take blood glucose every hour among other things. Continuous sleep is impossible.

But I'm not thinking so much about that right now, but rather of the incredible gift some anonymous wonderful soul parted with and granted me another chance. Him or her and their family are forefront in my mind. I hope they can find some peace this Christmas season and some comfort knowing they saved my life. Thank you Donor! THANK YOU THANK YOU THANK YOU! I won't let you down, I promise!

Last post?

[The last thing I posted to Facebook before going in.]

365 days listed, 33 here at Duke.

It looks like it's a go. THIS IS HAPPENING. But before they wheel me off to surgery and I go under the dark blanket of anesthesia, I want to tell you all how much you mean to me.

If you're reading this, you're a Friend and that deserves its capital F. It means that you have brought into my life a unique enrichment worthy of holding on to. Whether we interact a little or a lot, each time we do has import to me.

I have loved each and every one of you in your own individual ways for your own individual qualities. I've loved what you bring out in me, how you enrich the tapestry of my life, how you fascinate me and inspire me, and how when we're together, we're somehow more than we are when apart. And I sincerely hope that I've managed to do the same for you.

Tonight I am reminded that this transplant I'm about to receive is not just for me. It's for you, too, because with out you all, it would not be worth it. Thank you for being part of my life so far.

Peace.

Blowing out tunnel vision

Pulmonary Rehab Day 43. 

One of the CO2 buildup problems I experience when exercising now is tunnel vision.  Maybe this isn't tunnel vision as other people have experienced it.  Certainly not like movies and television depict it.  Actually, I still see everything my eyes take in; but my brain ceases to process the more peripheral signals meaningfully.  It's as if the translation part between sensing and understanding has been shut off.  This "narrows" my perception of the world to only what is directly in front of me: either the water fountain across from Bike 2, or the green cork of the track ahead of me.  Everything outside of a very central focus starts to lose meaning and can even become unsynced from reality; the picture at the edges is about a half-second behind the picture in the center, and blurs somewhat when I move my head.  My other senses are unaffected as of yet, and they verify that my sight is not synced up.  It has led to some terrifically awful moments where I thought I was seeing something other than what I was actually seeing.

So how do I get rid of this?  I stop.  I sit.  I breathe, concentrating on pursed-lip breathing.  In a couple minutes, the tunnel vision gets blown out, though there are other CO2 effects that take 20 to 30 minutes to be relieved of.

It strikes me that this physical sensation during exercise is analogous to my overall experience here at Duke.  Of what I can see or be told, my perception of it all may in fact be skewed, with only a small part being in perfect comprehension. Furthermore, I'm also aware that I'm losing emotive connection with the rest of my life.  The import I previously assigned to house, home, job, friends, pets, New York.... it is all becoming like a dream.  Like a life I read about on somebody's blog.  I've only been here two months and already the meaning of the on-hold portion of my life is becoming warped and suppressed, leaving me to focus ever-more on what's in front of me.

Blowing out *this* form of tunnel vision means asking questions, weighing the answers, comparing patients' stories.  It means staying in touch with old friends in New York and planning for a real future after transplant.  It means continuing to make new acquaintances here with people whose own stories put mine in perspective; for they blow out the central focus and bring clarity to more of what's around me.

Today, I was running late and missed my usual morning floor class.  So I returned to rehab to attend the 4:30 floor class. There, I made the acquaintance of three sweet old ladies. Other than the instructor, it was just me and them in the building by the end of class.  Now, I'd seen them before, but hadn't had a chance to even introduce myself, much less socialize.  It turns out these three have been here a long, long time.  They each have high antibodies, so their waits for lungs are so far anywhere from 5 months to 18 months.  This is long, in Duke terms.  They are also three of the most patient, cheerful women I've met in rehab.  And like Macbeth asking for knowledge of the three witches, I asked how they can stand it - seeing patient after patient come and go while they wait.  They pointed out that they get to know people and are genuinely happy to see them transplanted and move on.  They mentioned every day they can go to rehab is a good day, really; but that they've kind of stopped believing their phone will ever ring.  I explained my 10-month wait in NY and feeling the same way.

They assured me as I was leaving that I'd be Thane of Cawdor.  No!  They said "you'll get transplanted soon!"  And I walked out into the drizzly cold with an expanded awareness of the state of things.  My world somewhat redefined, made clearer; my own place in it more firmly located and sized.

Tonight, I was reminded that I suffer tunnel vision only by my own doing, and that I have the power to blow that out.  By sitting. By breathing. And by talking to new friends.

The Infectious Disease Emperor Has No Clothes!

The following are some thoughts that I first put down in an email to a friend.  It was precipitated by a mistake on my part.  A small mistake and one that has a 99.99% chance of being of no consequence.  But a mistake nonetheless:  I forgot to change gown and gloves.

The incident is that I arrived at Duke 7800, gowned, masked, and gloved, and dropped off a tray of coffee and dropped my coat in one patient's room, literally not physically touching anything - consciously not doing so.  Then I went down the hall to another patient's room and chatted with her.  I should have changed the gown and gloves, according to protocol.  (On return, you can bet I did everything correctly.  Not wanting to rock the boat here.)  While I feel that in this one case there was zero chance of transfer of any germs, I have to admit I broke not only the hospital's protocol, but my own. 

Hell, I'm cautious because I'm protecting myself as well!  I don't want to pick up any germs from my two friends and make my precarious position on the list untenable.  So I'll make sure the protocols aren't broken again.

What's frustrating is that I don't feel like these isolation protocols go far enough.  The CF patients are in more danger from the doctors on rounds and the food service people than they are from me, I think.  The established precautions deal with gowns and gloves - but aren't they for naught if there is no change of mask as well?

Not that I've seen any of the staff wearing those!  Call me ignorant or uninformed, but if you've got a patient on droplet protocol, YOU should be wearing a mask when tending to them!  Your own breath can be a vector for disease transmisison, especially if you are in close contact giving insulin shots, listening to chests with stethoscopes, etc.  And pants and footwear aren't isolated, either. The gowns reach to the knees on most people, but that's all.  And the pens and hair-touching... Am I crazy here?

Having worked in pristine white Christmas windows during setup, I'm coming to realize that I have a keener awareness of how contamination spreads than most of the medical community, because I've seen it in a visual form, both in terms of dirt tracked in, wet paint transferred from surface to surface, and glitter tracked literally everywhere. In 2011, I lit a set of windows for Macy's that were generally squeaky clean white, with portion covered in various kinds of fake snow or colored glitter.  We are extremely careful to use clothing protection, booties, gloves, etc.  We are extremely careful handling anything with glitter glued to it.  And yet, there was a single set piece using a particular red glitter that I was exposed to ONCE.  And six months later was finding that glitter AT HOME.  Theoretically, it shouldn't have been possible.  But the proof was before me.

If I could get Infectious Disease at Duke to come load in white, glittery scenery for a week, they'd be horrified at how lax their infection control protocols really are. And don't get me started on what I've seen so far of the horrific infection control gaps in ICU and step down, judging from pictures and anecdotes of recently transplanted friends.  I'll post soon enough on my own first-hand experiences in that realm, and with more surety.

And then I'll probably write a long and angry letter to hospital administration.  Why?  Because it is apparent to me that Duke Infectious Disease cherry-picks what protocols to follow, especially as concerns CFers. The result is highly convenient for the staff, and pays lip-service to infection control, but is largely smoke and mirrors. Their wards aren't set up correctly to provide the infection control required, so they go at it with what could be termed half-measures.  And it is simply not valid to have good isolation protocols on 7800 for CFers and then ignore it all in clinic and pulmonary rehab.  I wonder if the reason Duke Transplant doesn't work directly with Duke's CF center (!!) is partly because they can't handle the CFF guidelines for patient isolation?  The one time I asked, I had sunshine blown up my ass. "Well, our Infectious Disease department doesn't feel those precautions are entirely necessary..."  Oh, really?  With a patient population seeking lung transplant BECAUSE intractable infection has destroyed our lungs, you don't feel you should work a little more on at least requiring masks on all your CF patients in clinic and in rehab?  It's fucking nuts!

Sorry. But this just hits one of my most sensitive buttons. And if you ever come visit me, you'll find me behind a mask whenever there's another CFer in the vicinity.  It just makes sense.  If Duke sees sense in changing gowns and gloves between every room, then what is their hangup regarding masks?

40 days, part I

Pulmonary Rehab Day 40. I am no Moses, and these people are not the Israelites.

As I was leaving rehab today, I looked over the space, filled with a fairly large crowd of people, all doing their thing; going through those motions that they will have to go through indefinitely. Some are pre-transplant, some are post, but they'll all be in rehab until released, renewed, or dead. There is definitely a "wandering in the desert" feel to it sometimes. I wish I could work a miracle and lead all of these people out of there and into the sunlight without need of oxygen, g-tubes, or walkers.

The number 40 has a prominent place in the bible. It rained for 40 days and nights. And Noah waited another 40 to open the ark. Moses was on the mountain for 40 days before coming down with the commandments. Goliath terrorized the Israelites for 40 days before David took care of business. Jesus fasted 40 days in the wilderness. Etc. And also, the Israelites wandered 40 years in the desert before entering the promised land w/out recrimination.

I do not know the Bible well, nor do I particularly study religion. I just find the theme interesting: that after 40 days, something good often comes to those who have been patient.

Today was my 40th session of pulmonary rehab. Do I dare hope for a call tonight? Is this the night Duke's David slays CF's Goliath? Alas, I have no more hope of it this night than I had last night, or will have tomorrow night. Indeed, I have evidence my wait may be a great while longer.