A more sober transplant seminar

Yesterday I attended another transplant seminar.  There was very little information in it that was new to me, though there were a few tidbits.  I don't think the first speaker, one of the post-tx nurses, was very into it, but the PA who followed her was very lively!  I remember him from before. (I can't conjure his name at the moment, sorry.)  He's the one who shows off the teddy bear and how you hug it to cough immediately after the surgery. 

Anyway, as enthusiastic as he was, I felt very sober in this meeting.  The morning before, I had been skimming through Facebook and saw a post by a CF friend that one of her CF friends, Savannah Wood, had passed away.  I followed the profile link.  There wasn't much on her wall, but there was enough to construct a story from.  She'd been transplanted in September of last year and was apparently doing pretty good, but had chronic rejection - and that ultimately got her.

We talked about rejection at the seminar.  Mostly, the professionals reviewed what the grades and kinds of rejection are and what biopsy results mean.  (An A0, B0 is great.)  They discussed what steps can be taken to treat rejection.  But they didn't mention that some rejection doesn't respond.  They didn't explicitly put it out there that sometimes, rejection gets the upper hand and you die.  (One could argue that given enough time, this is true in 100% of transplant cases, perhaps.)

At the same time, I was also thinking about my friend Jerry Cahill, who at this very moment is lying on the transplant floor, having gotten the call Thursday.  I presume he's doing well, as he is sporadically updating his Facebook.  Now Jerry and I are no longer in the same boat.  He's moved on to the next boat.  Still tricky, still many medical problems - perhaps more.

The PA put up a picture of another recently transplanted patient on the screen, or at least that guy's incision.  This, too, brought to mind Savannah, as one of the pictures still on her wall is of her incision and chest tube holes perhaps two weeks post-tx, replete with several dozen staples (88? like a baseball?) and freshly sutured chest tube wounds.

It's all very sobering.  This is going to actually happen!  Theory will, at some unspecified point in the future, become reality.  And most sobering is my knowledge that not all things end well for the patient.  I cannot forget Richard, who passed away about six years ago and whose funeral I attended in Oklahoma.  He got transplanted, but never left the hospital.  To be sure, there are many among my network who have done exceedingly well post-tx, such as Piper Beatty.  I pin my hopes on those success stories; but I am a realist.

Don't misunderstand me; I'm not afraid.  But the timing is crucial.  The doctors know that; I know that.  But chance, god, fate - whatever you want to call it - does not know that.

Goodbye, Savannah; you are missed. Breathe easy.  Good luck, Jerry; I'm hoping you'll be the textbook-perfect case.  Because I need that good example.

One Finisher (Scotland Run 2012)

It was a beautiful morning for a run.  Though I had lingering doubts about the wisdom of going out for a 10K after months of running no more than 2.5 miles, and zero runs under my belt since early February, I forced myself to go.  My trepidations also stemmed in part from knowing the last time I'd run in Central Park at all was Boomer's Run to Breathe last July 9!  How can so much time pass so fast?  Well, I'm glad I did today's race - as one popular internet meme goes:

I ran this race because I had good impressions from the last time I ran it, which turns out to be 2007!  I ran a 1:12 in that race, which I knew to be better than I could do today, being a little more lung-damaged and a whole lot more untrained.  The race is fun because people really get into the spirit of celebrating Scotland.  They were kilts, tartan sashes, hats, shorts - anything really - and there's the Scottish flag splashed everywhere, especially in face painting.  The Scottish sponsors provided really nice swag this time, including a muslin shopping bag and a stocking cap that'll be perfect for next winter.

I didn't warm up other than some brief calisthenics - I needed to save my energy for the race.  I hung out beside the pink corral and slipped into the stream of runners when the brown bibs started outnumbering other colors.  Why walk a half mile back when I can save the effort and my legs?  I'd fueled poorly the night before ( --- and a big FUCK YOU to National Grid, btw, for turning my gas off unannounced over an ID issue --- ) and didn't fuel great in the morning.  I did remember to bring powersnot and Endurolytes; both of which I feel definitely helped me get through this race sans cramps.

The race started right on time and I crossed the start line 7 and a half minutes into the race.  I kept mental track of my splits as I went and pumped out the first three miles in roughly 12:30s - and that included the worst hills.  I was ok with that.  But lack of training became clear in mile four, where my time went over 13 minutes and then especially in five and six, which had to have been approaching 14 minutes per mile.  As in other races, I was not thrilled with the marathon-identical uphill finish. But whatever.

One thing occupied my thoughts much of the run: the announcer at the start had mentioned there were 15000 entrants and "how many finishers will there be??"  One, I thought.  For each person out there, the run itself is an individual effort.  Each of them will say "I finished".  Probably not "we finished" (OK, maybe a few couples and teams).  But with every non-relay race and every runner at every level, there is only one finisher:  I.

And yes, I finished.  I did so in reasonably good shape in 1:19:55, managing a per-mile average of 12:52.  Very slightly better than my last two NYRR races and certainly better than some of the miserable death marches of the past.  It gives me hope that with some actual training, I might get down to a 12 minute mile for the next Boomer run. And perhaps then I won't suffer the pain of today for having gone too far on too little training.  Though, to be honest, I've finished in worse physical shape even when better trained.

Tx seminar #...I'm losing track

Another transplant seminar today.  This was a good one, covering post-transplant recovery and drugs.  One doctor (nurse? I never quite caught it) talked about what happens from the moment they staple you shut and wheel you into recovery.  There was another patient there six months post who confirmed what was being talked about.  Some of this included complications and that these speedbumps are considered part of the journey, not a step backward.  This patient had a SEVERE couple of complications and nearly died.... but trust in the team, dedication and adherance to post-tx regimen...and he's doing really fanstastically well.  Looks great, sounds great, heavier body weight than ever in his life (from 104 lbs at time of transplant complications to 160 lbs now).

Nothing terribly surprising in the post-tx process.  I've heard it all before from other patients.  Also nothing surprising in the pharmacist's discussion of post-tx drugs.  I did learn a few new drug names and that some are an either/or choice - that you are on certain drugs at the same time.  Also reassured that while there will be some experimentation in the tailoring of the drug cocktail to me over time, that the process is the same for everybody and ultimately everybody arrives at a good drug combo.  I sent a scan of the summary sheet of the handout to my mom and sis.  I did learn one blood-thinning drug is taken via injection.  The pharmacist was surprised when I asked how it compared to the ease of, say, a Lantus or Novolog pen injection.  She described what's possibly an even easier injection! Great.

So... I am substantially mentally prepared for the after part.  I know it's gonna hurt like hell for a while, but that pain medications will take the edge off that, and I'm not one to be afraid of some pain anyway.  Don't get me wrong: I am vastly appreciative of lidocaine and the like, but will not shirk at some post-operative pain.  I found myself wondering how it would compare to the pain I felt after my motorcycle accident, where I was in astounding pain from head to toe.  Enough so that not only did Percoset do nothing at all, but I didn't even know until a couple days later that I'd broken my leg at the top of the tibia.

Of note: I talked with the patient sitting beside me, a young woman named Rachel.  I had already retrieved a mask and put it on, but I wanted to make sure I wasn't sitting next to another CF patient.  Turns out she had something else quite unique in the people I've met so far:  Lyme disease.  This autoimmune syndrome has destroyed her lungs.

We got onto the topic of PFTs when she asked if I'm listed and I said I wasn't, but since my numbers now regularly dip below 25% FEV1, here I am: evaluated, trying to maintain, learning, biding my time.  She was surprised.  She's in the high 30's still, but sats in the 80's if she so much as stands up and is on two liters of O2.  I suggested that it may be unusual, but really we were talking about two different measures: PFTs measure volume and muscle tone, whereas saturation measures how viable the remaining gas exchange tissue is.  Clearly, her autoimmune has damaged her alveoli all over without as much scar tissue as I've got. On the other side, I have 70% of my lung tissue remaining, about 30% is viable gas-exchange real-estate, but seems to be functional, hard-working real estate.  So, low FEV1, but can remain at acceptable oxygen saturation.  I did admit that I should take more measurements during exercise and when I wake up in the middle of the night; try to get a picture of THAT.

Well.... the evening went very long, though was worth it.

Two quick items in other news:

1)  I'm setting up a cat TV.  The tank is set up and cycled and I will go get three guppies tomorrow from a breeder that is offering all-black fancy guppies.  A good starter for me, I think, and the cats should certainly enjoy it. :)

2)  My friend and kinda mentor Jerry Cahill got the call tonight for new lungs.  That's all I know right now.  Whether this turns out to be a dry run (most people have one or two dry runs and I met a guy who's had EIGHT so far) or if he wakes up tomorrow a partially new man, time will only tell.  I wish Jerry all the best no matter what.

Transplant seminar #3

Since being accepted as a pre-transplant patient at Columbia, I've had to start attending educational seminars, designed to equip with patients and their caregivers with as much information about transplant as possible without resorting to throwing encyclopedias at us.  Each seminar is two talks, usually, and focus on one corner of the transplant world.

The first I attended was actually rather nice, as it was a panel discussion of post-tx patients.  (They generally have their own support meetings, so it is not common to meet post-tx people.)  It was great hearing their stories, seeing how healthy they've become, and listening to the complaints of their caregivers, who seem to have become accustomed to being bound to a *sick* person, rather than just a *person*.

The second set I attended had to do with the ex-vivo project.  Columbia is in a group of five transplant centers doing the very first ex-vivo lung transplants, using a machine that can keep lungs viable outside the body much longer and allow for treatment of those organs before implanting into the recipient.  Fascinating stuff.  So far, they've done two.  The study needs 42 before the FDA will consider it an approved method.

Today's session was a two-parter covering the donors themselves and pre-transplant testing.  I found it odd that Carmen Saunders was covering that topic (and she needs practice!) considering that every patient in that room had already gone through these tests.  But that's an assumption. And perhaps the caregivers aren't up to speed.  Or maybe we need a reminder why some tests get repeated so often.  I personally didn't find any of the tests too onerous, despite the gloom-and-doom rhetoric from other patients, except perhaps for the bicycle test, which I see the importance of and am glad to repeat anytime they want it.

The topic of "who are the donors" was new area for me, certainly.  I was shocked to find out that not every donor is an accident victim.  Or rather, that there are circumstances under which a person is considered a viable donor but is NOT DEAD YET.  Cadaveric donors were not covered, as they're pretty much no longer used for whole organ transplant, only certain tissues.  Of the remaining donors, where heartbeat and breathing has been maintained through brain death in one fashion or another, here's the breakdown:

1)  traditional brain death - typically an accident victim.  someone who is found still alive but who dies en route to the hospital, or is killed in a way that poses no trauma to the thoracic cavity, but damages the head AND life support begins immediately.  This is the ideal case and the one I certainly think of when pondering how I'll end up with lungs (if that should so happen).

2) DCD or Donation after Cardiac Death.  This is a NHBD Category III donor, who is still alive, but will die if life-support is withdrawn.  There are strictly controlled standards against which patients are judged.  The injuries must be fatal, the patient has no hope of recovery, and continued life-support or treatment is only prolonging the inevitable.  Etc.  (This would have been my dad.  He donated his corneas; and the transplant surgeons can be ready, but after his pulmonary embolism, it became only a waiting game.  Dad's fate was sealed at that point.  Unfortunately, since his lungs are what killed him, his other tissues were too damaged from poor oxygenation to be useful.)  ANYWAY.... this is a less-common category for donors.

3)  extended criteria donor.  This is the healthy old guy out mowing his lawn who takes a rock to the head and never wakes up again.  If you're over 65, you don't meet donation criteria.  But exceptions can be made.  I'll take a 65-year-old marathon runners lungs any day over a 20 year old basement-dwellers'.

4)  Finally, we learned about CDC high-risk donors.  These includes people who have been incarcerated, have a drug history, history of risky sexual behaviour, etc.  Not entirely off the eligible donor list, but a person would receive their organs only if in dire, dire need.

I also learned today that if there's a multiple organ transplant, it's the condition of the lungs that is the primary determiner of viability, as opposed to liver or heart.

And what exactly goes into a patient's LAS in the UNOS system?  PFTs, arterial blood gas results, and the number of feet walked during the 6-minute test.  There may be more, but those were mentioned.

I find these seminars mentally exhausting.  Not to mention my personal discomfort being in the same room with other people who may have bugs I might pick up or who might get my bugs.

Coffee obsession

I have a problem: I can't seem to stop collecting coffees. Or maybe the problem is that I'm too delighted in all the variety out there. The obsession isn't actually about coffee: it's about CHOICE.

I have a Keurig brewer, which was a gift two (three?) years ago from my mom. It is, in fact, the only coffee maker I've ever loved. It's just so EASY. And it makes switching from one variety of coffee to another - or even to tea or hot chocolate or chai - as simple as getting a sampler pack or a 12- or 18-count box at the local grocery. On a weekend, I may have three different kinds of coffee in a day. Or tea. Or hot chocolate. It's great!

These aren't the K-cups you're looking for.

My problem is that I don't quite finish a box before stocking up on a couple more. So at present I have six varieties of coffee in my pantry, another half-dozen represented by stragglers in the little revolving carousel, and two varieties of K-cup tea.

They're like merit badges!

Not that the long-rooted tea obsession has gone away either! In teabag form, I have three different kinds and in loose-leaf form another four. And as long as we're on the topic of pre-packaged hot drinks, I'll admit that I also recently got a box of Trader Joe's instant coffee (pre-sugared, pre-creamered) just to try it. At 10 cents per serving, I'm not risking much.

And it doesn't suck, believe it or not.

But is all this variety too much? Sure, I love offering my guests a large choice, from regular to hi-test to half-caff to decaf and even herbal teas. But I'm the first to look at a restaurant menu and point out that I could make a decision a lot easier if there were fewer choices!

LESS choice is a discipline and is probably a good one. For instance - let's look at the lines formed at two different establishments for getting your morning cuppa on the way to work. On the one hand, you have Starbucks - highly glossy, awful coffee, very expensive - I have to wonder why people ever go there. Ah, but they have CHOICE. So they flock to the counter, debate for a while, give their complicated "coffee" orders, which take the baristas five minutes to make, and the whole trip takes 10 or 15 minutes.

If you get tennis neck from reading the menu, it's too big.

But on the other side of the street, there's the local deli or small diner. They make one kind of coffee - and it isn't decaf. It's made by the gallon (or two or three) at a time. They have some choices for cream and sugar or their substitutes, but those are limited. And if you have them do the cream and sugar, they do it one way and that's it. Guess how long their lines are? They have none! Not for lack of customers, but because they have a high turnover rate on each order. A good sidewalk coffee/donut guy can pump out 180-200 cups of coffee an hour.

Order some breakfast in your head.  See how easy that was?

So if less choice is clearly the better way to go, why am I so obsessed with collecting coffees and teas? If I'm honest with myself, I could be happy with a single roast for the rest of my life. (Note: that roast is currently Eclipse, but any of the extra-bolds will do.) I don't get bored with a coffee so much as distracted by shiny new ones. If I weren't such a braincase, perhaps I could have some mental discipline and narrow my coffee selection to something more reasonable. Perhaps I can focus if I have just one more cup of coffee...