Gold Stars

Pulmonary rehab Day 18.

Let me just first say that it was nice to be able to scope out 7800 as an outpatient first, rather than having my first view of it being from inside a tangle of tubes and wires.  That will come soon enough.  But for today, it was nice to meet a couple of nurses and at long last meet Christy Hamilton.  I brought her a coffee (outside coffee being to hospital coffee what a Sportster 1200 is to a Honda 250) and we ended up chatting for over an hour.  Hated to leave though; Christy is fun to talk with!  I left feeling like we'd both earned a gold star; her for battling through her current health issues, and me for battling through the corridors from Clinic to Main with an e-tank so I could bring a friend a coffee. But I finally HAD to leave to get back to rehab, where I had begun my day but had to finish!

Speaking of which, that went well, as usual.  Weights: check. Always adding reps or, once I've reached 25, adding weight and resetting the reps to 12.  Getting stronger.  Bicycle: awesome.  Kept it on resistance level 3 the whole time, went 4.2 "miles"; a new personal best.  Of course, nobody really notices when a pulmonary graduate notches something better, because they're not keeping a close eye on our charts.  Oh well.  I'm far too old for gold stars, aren't I?

But they do give out stars!  At least, I noticed that one of the therapists, upon checking out post-transplant patient Rudy (who is setting a very high bar for everybody), penciled a star by how many laps he walked in 20 minutes today - 24 laps, or 1.2 miles.  Bravo Rudy! 

I, of course, took that number as a personal challenge.  It took everything I left in me for the day, but I had just finished lap 24 as my timer went off.  I was proud of myself, but I got someone else to double-check and count my beads, in case I was mis-counting.  Definitely 24 laps in 20 minutes.  Ah, but nobody's checking my chart and putting stars on MY new personal bests.  I will have to just reward myself.

I also had to stop by clinic today for a mishmash of HepB booster shots, talking with my pre-transplant coordinator (Kay Raburn), signing consent forms, and getting waylaid by another blood draw.  Apparently my WBC is high.  This, actually, is keeping me from getting listed. FML. If it doesn't go higher, I'm told, I could be listed next week.  And if it does?  A few weeks of antibiotics? Delayed listing? Come on, immune system, don't fuck me now!

I got home very tired, but happy to see my sister Rebecca.  (Family is coming in this weekend for an early Thanksgiving!  So perhaps it is good that I for sure won't be transplanted until after this get-together?)  Once home, I discovered a text message from Christy thanking me for visiting and how she didn't want me to leave.  Shortly after, a FB message from my old classmate and fellow Tisch mafia Olga Maslova saying her family asks for updates on me daily.  Then, just after dinner, I opened up email and found my CF doctor in New York checking in on me.  And even as I'm typing this, a very dear friend of mine in D.C. just texted to find out how things are going.

The contrast is shocking: on one hand, I float in and out of rehab, putting in my workouts, notching better and better scores, but the people who should have eyes on this don't - or at least not that I'm aware of...  And on the other hand, there is a cloud of contacts out there, just on the other side of this screen, who very much have eyes on my situation.  On ME.  People beyond my immediate family.  Outside of the classroom, I'm not used to being the object of attention, but I'm coming to realize a lot of people are following my progress closely, one way or another.  It touches me very deeply and I'm grinning ear to ear, even if you can't see it behind this mask.

Today, I am reminded that I am loved, with or without gold stars.

Maintaining control while letting go

Pulmonary rehab, Day 16.  How does one maintain control while letting go of it?  This has become the central philosophical question for me.

I experienced a hard low today in rehab, by which I mean that my blood sugar went below 50.  I had begun the day by going to rehab early, ostensibly to fit in the parts of the required workouts that I wouldn't be able to fit in by the 4:30 class if I only arrived at my designated 3:30 start time.  I ended up doing all my workouts (weights, bike, walk) before 1:30, essentially using the relatively uncrowded heart-patient time slot to ease up my day.  (I am pleased to report I marked another record distance on that stationary bike - 4.1 miles today with an increased resistance level for 15 minutes out of 20.)

Then I made the mistake of going to lunch.  I needed to refuel so I could come back for a little more workout before class.  So I opted for two bean burritos and a cherry limeade sparkler.  Now, the limeade is 44 grams of carbs, according to Taco Bell's website.  A bean burrito, 56g.  I calculated 156 grams of carbs and divided by 9 (as I recently bumped my insulin to carbs ration downward from 1:7 to 1:9).  I injected 17 units of insulin.  Then I went back to rehab.

After being denied permission to try jogging on the treadmill, which I feel up to at least trying, I was told I could walk on an incline on the treadmill.  A different kind of workout from everything else, so why not?  I did 20 minutes with that, feeling good, then joined the floor class in progress.

Or tried to.  Five minutes after lying down and in the middle of some leg lifts, I started feeling "off".  The hot and shaky I attributed to having just come off the treadmill.  But now my vision was starting to change and I had that weird feeling inside that signals a diabetic low.  And when your vision begins to go, you know it's bad.  So I stood up and zombied my way over to my bag o' holding and got my meter and strips out.  40.  My BG was 40.  And probably dropping.

So I sat there for a while, first gobbling a snack pack of marshmallows, then some juice and crackers that the staff brought me, testing my BG every ten minutes.  The staff is very vigilant against diabetic lows here; the won't allow you to work out if your BG is below 70.  40, 55, 63...finally 91 - just in time to clean up the floor mat and put away my weights.  Great.  Thanks diabetes, for making me feel like someone who can't manage his condition.

I need to get control over these lows.  And I will.  I have the knowledge and tools to make that happen.  But even with the best control, things go wild sometimes.

Before I left for the day, I chatted with several patients, all of whom are post-transplant.  One is awaiting her second transplant, after 16 years with her first pair of lungs.  I told her my concerns over the possible gastric problems post-transplant, especially being concerned with not being allowed to eat and being forced to get a GJ tube which, while common in CF patients, is not something I'm particularly cool with.  It represents failure: failure to gain or maintain weight; failure of the stomach to empty; failure of the esophagus to "wake up" post-surgery. These kinds of things.  For the record, I'm cool with an NG tube, which is fine if the stomach is working and only the esophagus is a problem.  But I digress.

As I'm going over my concerns about post-transplant problems and even mid-surgery complications, she stopped me.

"You have a lot of education, but you're overthinking this."

She's right, of course.  Transplant and the course of recovery right after are something I actually have very little control over.  And why did I come to Duke anyway, if not because I trust that these people know what they're doing and will do right by me?  The fact is, my best control over how I do AFTER transplant is what I'm doing BEFORE transplant: gaining as much physical fitness and body weight as possible.

And that's it.  I've spent a lifetime tightening control over my own life and increasing my compliance with my prescribed health regimens in order to stave off transplant and death for as long as possible.  But I've reached the endpoint of what that degree of control can do for me and it is time to turn my body and life over to people who I quite simply have to trust.

Giving up control over my healthcare is entirely antithetical to the very strategies that have helped me live this long.  But today, I was reminded by plummeting blood glucose that control is often and illusion. And it can only take me so far, anyway.  Letting go is the next best step toward health, toward regaining some control over my life, and toward happiness.

What being pro-life really means.

Rehab Day 14, end of week 4.

It's kinda awesome flying solo as a pulmonary rehab graduate.  The therapists trust you to keep pushing and improving.  I knew today would be a hard workout; I was looking at a full weights workout with increased loads and reps in most exercises, 20 hard minutes on the bike with slightly elevated resistance, and 30 minutes at the fastest walk I can sustain.  Fortunately, all the right songs kept coming up on the iPod: Eye of the Tiger, Garth Brook's Standing Outside The Fire, BEP's Pump It.  Motivators like that.

You know what else is highly motivating?  Talking to other patients, especially post-tx patients who are just blowing me away with the progress of their improvement, such as April Elaine Campbell, whom I finally chatted with after these many weeks of just noting each other's presence.  Really, finding time to actually chat is hard.  We just happened to be shadowing each other during our weights workout. Nice girl, just got transplanted Aug 21, and has this beautiful, glorious, healthy glow about her.

I arrived somewhat early today and sat with another pre-tx patient awaiting the appointed time at which we graduates may begin our ritual exertions.  So he and I observed the post-transplant floor class in progress with perhaps a dozen patients and the stunning import of it washed over me.  "Do you realize," I asked him, "what a multiplicity of miracles is represented right here in front of us?  Thirty years ago, not one of those people could have been saved.  None of us in this room could have been saved!  And yet here we all are.  And that pool of oxygen-hose-free humanity before us represents solid proof that you and I...are not completely fucked."  He chuckled at that.  He doesn't have a lot of breath for chit-chat, but he let me know he thinks of this every day.

How is this possible?  70 years of progress (with major milestones being established in the 80s by Dr. Joel Cooper) backed by hundreds, thousands of men and women of scientific bent creating drugs, testing procedures, tracking patients, and slowly building up the necessary techniques to take the living tissues and organs from one dead person and use them to keep another person alive.  Not merely alive, but vibrantly alive, magnified, restored and improved.  Through economic turmoil, wars, natural disasters, religious strife, and even doubt from within their own ranks, these physicians, nurses, research scientists, and surgeons have plugged away at the problems of transplant - as all such legions do against the various forms of death that come from within our own bodies.  It is conceptually overwhelming to visualize the scale of support, both present and historical, that has given us this scene of 12 grunting, sweating patients, sporting 12 new incision scars and breathing with 12 sets of donated lungs.  Each, individually, an inspirational example of surviving against the odds, but also in aggregate, another data set that moves the entire world of transplant forward.

Today, I am reminded that while the rest of the world rages and burns, the scientific community acts on behalf of life, always seeking better and more and a higher quality. Amen.

We're all in this together

Day 13 at pulmonary rehab.

The nice weather seems to have made people more voluble, even those who are normally silent and withdrawn. One girl I talked with - whom I've seen almost every visit, but haven't previously had a chance to chat with or who put off vibes that caused me to defer - has quite a long history at rehab, having been coming here for four years! She's a college grad and recounted what she believes tipped her into the long decline to where she is now - a bout of influenza. I too took such a hit in 2009 and in retrospect it probably was the beginning of my irreversible decline, too.

We'd just chatted with a post-transplant guy who just looks GREAT and she commented to me how it was a complete 180 from the version of him she first met. She noted that's true of so many; she's seen a lot of people come and go. I respect her seniority; and I suspect she was trying to tell me something, too, possibly that she's afraid I'll also pass her by while she continues to walk loops of the track.

She lamented that while she is definitely sick, her team doesn't want to list her needlessly early. Her summary began sounding familiar. I talked to her about my concept of the donut hole and how it has landed me in an untransplantable grey zone on the list at Columbia -- and she completely agrees that's what's happening here with her. But she also agrees that she won't have to be death-bed ill in order to be transplanted here at Duke - that she'll be listed once she's just a little bit sicker than she currently is. And as she has CF, that's frankly only a matter of when, not if. We talked about our fears of one or two more good lung infections sending us rather speedily to our graves, if the transplant team can't "catch" us fast enough. But we don't believe that's as big a danger here as elsewhere. We believe we're in good hands, not because everything is perfect at Duke, but because we believe nobody else is doing better, or even coming close.

Today I'm reminded of the ties that bind us - across distance, across the isolation imposed by our disease, and across the differences in our transplant journeys, we have common experiences, open lines of communication, and often arrive independently at the same conclusions. We may be ships passing in a dark and foggy night, but we have the comfort, at least, of the wireless bringing us each other's voices. "We're here, we're here. And we understand."

I eat with ALL the doctors!

Due to some strange circumstances in a raffle at today's Lungapalooza, I now have a series of opportunities coming up to break bread one-on-one in a non-clinical setting with most of the transplant doctors and surgeons at Duke.  And one post-tx coordinator.  And the only doc I'm not having a meal with is MINE, and I'm seeing him tomorrow morning.  Bizarre.

So.  What sort of questions would you ask, if you were going to these meals?  They will probably be short meals, and obviously the staff can't reveal information about other specific patients, but… of all the things you wonder about before transplant, what questions fail to get asked because when you only have fifteen minutes with a doctor in the office, that's only time enough for the big questions.

I know I'm going to ask about the differences in dietary restrictions between centers as I've learned them so far.  I'm going to ask why they think there are very young patients in the program here (one whom I've come to know is only 15 -- what the hell went wrong with his CF care that he needs a transplant already??)  I'm going to ask if it's OK to push harder and farther than the nurses and rehab staff assume I can handle.  I'm going to ask when their patients generally become cleared for air travel, international travel, etc.





I'm also going to ask why they chose medicine, why pulmonary, why transplant? This is a risk-fraught side of the profession and they lose a large percentage of their patients all too quickly.  It must be emotionally taxing.

BTW, I met so many post-tx patients today.  It was really inspiring to see all these smiling faces walking around with their kids or grandkids.  But I also noted, off to the side, a memorial tent… I don't want to be in that memorial tent.

Remembering and getting angry

In the world of CF, we lose people way too often.  And almost always too soon.  I try not to dwell on the ones we've lost here on this blog, though I take the loss of each of my friends personally. 

Today I want to talk about a couple cystics who recently passed away, one old, one young.  Old?  You bet!

Harold Soloff was, to my knowledge, the oldest person with CF and he passed away September 23rd at the age of 82.  I'd call that a full lifetime, especially as he crammed in numerous accomplishments, such as serving in the military during the Korean War, fathering two kids, earning law degrees, teaching at university for 20+ years, and traveling all over the US and Europe.  Most normal people who die in their eighties will be lucky to have accomplished half of what Hal did.

Hal can explain a lot of his life himself, here in this article on page 5 from an issue of CFRI newsletter from 2011.

What I would like to highlight is a certain "never say die" attitude Hal had toward all things CF.  You can feel that in his article and I could certainly read it in the email interactions I had with him.  (Hal was an early member of the cystic-l mailing list, which recently migrated by force to Google Groups.  You can find it here.  As Phyllis had long since passed away and Hal was losing his luster for life, he chose not to follow the group to its new home, which is a pity.)  Hal's emails with people could be cantankerous.  He often got angry with people he perceived as not taking control of their own lives.  He survived so long by soaking up information and acting on it, that's clear.

But it bothers me that I didn't find out about his death until this week.  This, I think, is how much he had disconnected himself from the online community; but also a failure on my part to stay connected to him.

The other person's death I'm bothered by was a kid named Kyle O'Neil.  We were friends on FB until he defriended me over some silly thing or other.  It wasn't even important.  But because of that, I couldn't follow most of his updates.  I gather that he was in dire straights by August 12th and that he got a call for transplant, but I don't know what happened after that, or why he was dead by September 7th.  It just bugs me.  Where did we, the CF community, go wrong?  He was only 27 for chrissakes!  Why was he so sick so early?  Why can't we keep these kids alive longer? What can I do to keep this from happening again?

Hm.... useless rumination?  Or useful reflection?  I don't know.  CF is different for all of us and transplant is not necessarily a magic-wand solution.  It is HARD, sometimes lethally so.  It terrifies even as it offers hope.  It knocks you down badly, even if it goes stunningly well, and not everyone can climb back up that hill.  I just...

And when I look around me at the other CF patients at Duke pulmonary rehab, all of whom seem to be younger than me, I get worried. One of them, S, is just 15.  Fifteen!! This is insanity!  Why does he need a transplant so soon? Why is our medicine so primitive? I wonder if we're not moving the research along fast enough? Are we not being aggressive enough early enough with treatments? 

There's got to be a better way!

Duke Pulmonary Rehab

I'm not going to lie: day one kicked my ass.  I stuck it out, as I always do, and hopefully met their expectations for the day, but it was tiring, especially the 20 minutes I put in on the stationary bike.  It's going to be hard work getting in 22 more of these sessions.


Let me back up a bit.

It is the policy of the Duke lung transplant program that all of their patients go through pulmonary rehabilitation both before and after transplant.  One instantly grasps the necessity of rehab after a major surgery, but may not be so quick to realize why it is important before surgery.  You see, they would like each patient to be as healthy as possible prior to surgery - strong, flexible, able to endure.  The only thing that should be subpar is, of course, the lungs.  So: get your ass into the gym, you wheezy weakling!

And so, having cashed out my chips at the NY Presbyterian Casino and Hotel and gone down the road to Duke, I am being put through a program I could not even have imagined.  After a fairly thorough physical evaluation, including a six minute walk test, the therapists set my particular bar and off I went.

Each session of pulmonary rehab is FOUR HOURS.  In that stretch of time, each patient works with weights, does stretches, floor exercises, and two forms of cardio (stationary bike and walking), all topped off with a one hour patient education class.  This may vary from day to day; I'm not sure yet. (We did not have a class today, as the rehab center just moved to a new location and things are still a little crazy.)

So not only am I finding my way in a new city, finding a new facility (1821 Hillandale Road), but I'm a new patient to the staff and they're in a new building and not yet 100% up and running.  It must have been slam-bang crazy for them!  But onwards and upwards.  Time waits for no man.  Tempus fugit. Carpe diem.  Keeping the patients on their road to rehab is critical.

The staff is great.  Every single person seemed very en pointe and there are a LOT of staff members.  You are always being watched, always being coached, and always in the nicest way.  The new facility is also great.  It's not huge, but it does the job while at the same time having that clean, shiny, new-gym smell to it.

So today? My first session?  Let's just say I wish I'd dressed more appropriately.  Tomorrow it's gym shorts and a tech-t, water bottle in one hand, high-flow oxygen cannula in the other.  Because I'll be damned if I'm going to let 20 minutes on the bike make me feel like THAT ever again.