A View From The (Pelvic) Bridge

Post-transplant day 34; pulmonary rehab #13.  

I spend a lot of time looking at ceilings.  ICU ceiling, stepdown ceiling, my bedroom ceiling, the very nice ceiling at rehab during floor exercises.  That one reminds me of a gold and ebony river of tile, with fountains of light dotted throughout.  I find peace and harmony in a well-installed ceiling.  It's a matter of perspective, really.

Rehab is getting...repetitious.  Which is to say I'm starting to find it boring; it has always been repetitious!  But I am finding I'm using my boredom to attempt to go further, faster.  The problem is, my body isn't quite building up in the strength department like it is in the speed and endurance departments. So I use the latter to fuel the former, distilling strength from dull repetition. Laps.  Laps, laps, laps.  Or, seen another way, winding up.  (For what, I'm not sure.)  It's a matter of perspective.

I'm wanting to do better, faster than I currently am; not just in rehab, but also with my PFT scores.  If I don't blow the numbers I was expecting, I am disappointed.  Today, I'd hoped to blow an 80% FEV1 and at least 70% FVC, but fell short of both.  Never mind that my PFTs were technically up a couple of points from last week - I still failed to meet MY goal.  In a similar vein, Dr. Reynolds added another med, a beta-blocker. This runs counter to my goal of shedding some of these meds that I'm assured are "temporary".  I'm disappointed in myself somehow, in my body... Of course, people don't understand this failure. They see the PFTs, which are great for being five weeks out, and see an incredible success.  They see the right medicine being prescribed for good reasons.  But I want more.  So victory looks like failure. It's all in how you see it, it's in what yardstick you're using.

But the change of view isn't always negative.  I had a big shift in perspective Friday when I met my next surgeon, Dr. Hartwig, who will be performing a procedure to stop reflux.  I had an image of a certain kind of surgeon, based on little (or perhaps was an amalgam of Drs Lin and Davis), and was prepared to have to fight tooth and nail to get him to agree to a LINX instead of doing a Nissen fundoplication.  But the night before the meeting, I looked on the manufacturer's website for centers that do LINX.  The only one listed for North Carolina? Duke.  And the only surgeon listed?  Dr. Matthew Hartwig.

I about fell out of my seat.

Then, the next morning, after talking to a PA, a tall late-30's-ish man in an impeccable suit and Italian shoes strode through the door.  I had no idea why one of the hospital's lawyers needed to talk to me.  "Hi.  I'm Matt Hartwig."

Again.  Butt, meet floor.

And...he's with me.  From the outset.  He heard of my interest, has performed the LINX installation many times, thinks its appropriate in my case, etc.  His PA even had paperwork lined up to get a 3rd party advocate on the case to get this pushed through the inevitable insurance denials.  Once again - shocked!

I walked out of Duke on Friday with a whole new appreciation of the lung transplant team.  They are stern folks and unbending in some ways (if you have GERD, you WILL have an operation for that).  But within a framework, and once through the looking glass of your transplant, the doctors and staff are willing to work with you as a partner, not just as a patient.

During floor class today, as I lay staring at that beautiful ceiling and grunting through ankle-weighted exercises and pelvic bridges, I thought over Mom's next adventure.  She has been a good caregiver so far, but we both admit her load has been relatively light; the job frankly easy, as these things go.  Now Mom is proposing to a close friend who also needs lungs that she come to Duke and Mom will be her primary caregiver and her husband, who must remain in Florida to keep working to keep the insurance, will be secondary.  It's a good plan. Noble even.  But I worry that Mom could be getting into a hell of which we have no idea.  Even some of our long-term ICU stay acquaintances have had it easier than what COULD HAPPEN.  Mom may be in for a massive shift of perspective, too.

Today, I am reminded that sometimes people aren't what I expect them to be; that there's a level of strength and compassion that bubbles to the surface when it's most needed.  And that there's always more than one way to see things.

Survivor's Guilt

1 MONTH post-transplant; Pulmonary Rehab #12.

Today's bicycle and walk involved meditating on some sobering realities.

Recently, a friend sent me a statistic put out by the Cystic Fibrosis Foundation: that there are only 1300 of us CFers over 40 (out of 30,000 in the US). I really couldn't give credence to this. I doubt CFF stats as it is. It didn't jive. I know PLENTY of CFers over 40 - perhaps 2% of that statistic - 26 people or so. And I certainly don't know a proportionate number of CFers overall, 600, do I? But then, birds of a feather.... and I am moderator of a cystic fibrosis forum that attracts older patients as it is.... Hrm.

Then I got caught up in a FB thread in which the originator asked all CFers who could see the thread to post their age and location. There were hundreds of replies. And they're all kids. I mean...the vast majority are under 30.

There were only two replies from people older than I.

The median age of expected survival is now 41. But that's EXPECTED survival, not what's actually happening today. Could I really have survived so long as to be in such a small minority? 

I think of my close friends. Piper Beatty would not have lived into her 30s without a lung transplant. Denise Horgan would not have made it to 40, though thank god we'll get to celebrate that milestone next November! Every single CFer I personally know and have met in person is younger than me except for Jerry Cahill, who is 56, and Lynda Jensen, who is 47. She's the only older CFer than me in rehab.

I begin to realize that I have survived not merely a lung transplant, but a deadly disease that takes my compatriots way too early, before they've lived even half their lives.

And speaking of lung transplant, there are some who haven't come back. And they're not in the hospital anymore either. There's only one conclusion. There are some pre-tx who come at 3:30 and have been doing so since long before me and will be there long after me, waiting for their call. They have antibody issues, or similar, and they wait and wait. You may recall me talking about the prophetic Weird Sisters encounter - they are among the ones I think of as the Stalled Ones. They are in a very, VERY real Purgatory. Why am I one of the lucky few to breeze in on a short timeline, get listed, get transplanted, recuperate well...?

And recuperation...I'm real glad to have set or equaled some kind of record for leaving the hospital (9 days), but Piper is now in week 3 of her recovery, Denise 9 days still in the ICU, and other less close friends (but still important to me)... Jeannette in ICU for over a month, Kyle still in stepdown almost two months out... Why didn't things go easier for them? Don't tell me it's because they weren't as prepared or as fit. Denise sure as hell was, but she got a rawer deal. Speedbumps appear out of nowhere that seem capricious and no more predicatable than the roll of a die.

How have I done so well where others have .... not?? My accomplishments are cruel laughter in the face of their miseries. Ironically, to play the full hand dealt me and give full due to my donor's gift means I can't just mask the good numbers or hide myself away. Though it means thumbing my nose at my less fortunate peers, I must be all I can be. Hell, this weekend I'll be spending most of my time drafting. FOR MONEY. Who the hell a month out of a death's-door operation goes back to work??

But maybe I can carry this forward, somehow press the powers that be to look into new avenues of treatment, so that a whole lot more of us will be above 40. For instance, I was wondering if, since GERD seems to affect newly transplanted lungs, might it not have had an impact on my old CF lungs? Is my GERD ultimately responsible for tipping the balance and overwhelming any gains made by exercise and antibiotics? If so, then should the standardized CF treatment look to test for GERD on a regular basis in adults with CF and when found, should we be doing fundos or LINX on CF patients before their lungs deteriorate??

Today, I am reminded I have a responsibility not only to my donor and myself to make the most of this gift, but to all my cystic brothers and sisters, now and to come, to try to find better treatments while we also search for a cure. I have to. Because I have survived.

The Thief of Time

Post-tx day 29, pulmonary rehab #10:  The Thief of Time

Walking 30 minutes in rehab can be mind-numbing; your mind will wander.  Today, I found myself thinking about stasis and sedation. 

I've been reading a serial in Analog over the last few months called Lockstep.  Even if the name itself didn't already resonate with the frame of activity at rehab, the core sci-fi concept of the story certainly has begun to resonate.  A family invents a way to put people into stasis.  By being asleep 30 years and awake one month in endless repetition, and by having sub-light starfaring technology, mankind finds 70,000 worlds "next door" and sets up a vast empire.  In which people pass THIRTY YEARS in the course of "one night's sleep". Astonishing, when you think of it.  Eerily, the last issue of the magazine features two more stories dependent upon stasis issues for the plot.  In one, a crewman on a ship that will take 90 years to reach man's next homeworld finds he won't survive his turn in stasis.  So he lives, from age 8 to 80 on board the ship, managing to survive to see the new world, but losing all his friends, lovers, and family along the way - not to death, but to TIME. To stasis.

I begin to mesh this idea with the reality I'm living.  As I've told many, many transplant patients as they're about to go in, the hardest part of the whole process - the operation itself - is the easiest part for you; because it passes in a blink.  Your mind is suspended - again, stasis.  Sedation not only keeps you asleep, but erases a good part of any memory on either side of that sleep as well.  ICU time becomes compressed because you spend most of it sedated.

And the same is true of other procedures I've experienced.  Every time I go to Interventional Radiology, the procedure invariably takes longer than I remember, even when they're not putting me under, but rather just "making me comfortable."  Although, my last trip to IR, they had to have put me under.  For what I do remember are the clock times at the start and the end.  What was subjectively 15 minutes took about 2.5 hours!  Luckily, I was awake enough at the end to get the doctor to show me the 3" of catheter he retrieved from inside my jugular. 

But that time is lost.  And not in the way you lose time when you regularly sleep.  When you sleep, your brain still tracks time - hence people's ability to wake up 5 minutes before the alarm.  No, this time is LOST.  When I say the interval passes in a blink, I mean it.  To the mind, this is the stasis of sci-fi.

My latest example - and one where I now know sedation can last too long - is yesterday's bronch.  When inpatient, they do bronchs unsedated, but they're only looking at sutures and sucking out excretions.  When outpatient, the bronch also takes biopsies, so it is much longer and they want the patient sedated.  I talked to the doctor pre-procedure about strategies for numbing my reactive airway (nebulized lidocaine, which seems to have worked well) and he mentioned that CF patients are usually resistant to sedation and they go a little heavier with us.  So it went. 

Problem is, though he had a hard time getting me fully asleep (told me by phone today that I was attempting to text and trying to call Walgreens about my IVs), he finally did and got the bronch done.  What I could then tell him was that I think the sedation needs to be halted sooner and made lighter in general, for I lost THE ENTIRE EVENING.  Even though I went to dinner with friends (Mom driving, of course), I remember only snippets and Mom has told me of other events of which I have no memory.  I do NOT want to leave the bronch suite in that kind of mental suspension again!  In this case, I feel I've actually been robbed of time.  So we made notes and next month, we'll try going lighter, perhaps get me in earlier and keep me in recovery longer.  I'd rather be somewhat awake mid-procedure than be that deep again - for a bronch.  (Side note, it's apparently entirely normal to cough up blood clots the day after a bronch.)

My loss of time is minimal, of course, compared to Denise's.  She has spent seven days now in ICU, most of it completely sedated.  How much she'll remember is anyone's guess right now, but likely not more than a few minutes of it total.  It will be a shock to her to find out how much time has passed when they can finally wake her up fully and keep her there.  And given her racing heartrate when they try to bring her up, who knows how much time will be stolen from her mind, ultimately?  [Next day edit: To be honest, I awoke this morning with a certain gut feeling - I think they'll be successful in getting her off the vent today.]

And so I keep an eye on the clock as I walk laps. Today, I am reminded that while time may be passing slowly during this boring activity, it is at least passing perceived, rather than being slipped away by the stasis of sedation.

Impotence and Rage

I have no business writing this post this evening.  To put a finer point on it, I have no business writing about ME this evening.  My thoughts are with my dear friend Denise Horgan, who is lying in the hospital 28 hours post-transplant in ICU, on ECMO, with failing organs.  The new lungs are good, but cystic fibrosis and the attendant antibiotics have so poisoned the rest of her body... and there's nothing I can do to help her!  The feelings of impotence come flooding back...

More than a month ago, as I battled CO2 buildup while trudging around the track at rehab, I reflected on how impotent I felt.  And that that impotence had several facets, some of which persist through to today.

First, there is the obvious impotence of strength.  Before transplant, I was losing endurance rapdily.  Tasks that would have taken me 10 minutes a year ago now took 20 or 30.  Things I could have lifted easily, I could no longer lift.  In rehab I was able to gain some of that back, but once the CO2 kicked in, it started to fail again.  But I also didn't have the strength to prop myself up.  I didn't have the strength to be "the patient" to my family.  I let Mom handle communications with my family.  I just didn't have the strength to first get the facts of my life straight with mom and myself and THEN repeat them over and over on the phone.  I barely had the strength to keep in touch with the two women I've been going through this hell with, Piper and Denise.

Speaking of whom, my interactions with them highlighted the second impotence: inability to help.  If I could lay waste to the world and overturn mountains in order to find them lungs, I would have.  If I could have rendered...well, ANY significant help, I would have.  Unfortunately, physical and financial circumstances made that kind of help impossible.  The only help I've been, really, is acting as an advance scout of the Duke lung transplant program.  Maybe that helped in some small way, but...it does nothing to prevent their suffering or their pain.

There was a third type of impotence born of my own drive: inability to fulfill my own expectations.  I couldn't meet the goals I set for myself.  I kept falling short.  And shorter.  Years ago, I saw the need for a transplant coming and determined to find a spouse long before I needed it.  Someone who could stand by me in my moment of need, yet not someone who had a need to fill the role of nurse or mommy.  So how does that turn out?  I move in with my mother to be my caregiver for the duration of this odyssey.  Not a proud moment for a 42 year old man.

Fourth, impotence against the system to mold it to one's own needs and wants.  Especially here at Duke, which has a lot of "we always do this" and "we never do that" in their practice.  In a corner of medicine where individualized programs of care are nowhere more clearly needed, there's too much boilerplate medicine in evidence.

And today all of those points of impotence came flooding in, but in new ways.

For instance, strength, flexibility, and speed are returning - but I was told directly by a therapist not to try to be too big for my britches.  I can't lift more than 8 pounds. I can't drive.

I see some rehab friends who got transplanted finally returning to rehab after quite a while in the hospital.  Mary Frances and Shawn.  And as motivating as I was to them before all of us got our calls, I can't seem to motivate them now.  Impotence of persuasion.

Two closest friends - sisters really - lie in the hospital.  One recovering from her transplant with more hiccups to it than I'd like, but with a lot of spirit when she's awake.  The other is in ICU with great lungs but failing heart and kidneys and is septic.  She is....no, I'm not going to use that word yet....but she is in trouble.  And I am COMPLETELY FUCKING HELPLESS to stop her deterioration, or to render any aid to either woman.  I ask people on Facebook to pray for them because I know they believe in the power of prayer.  And if they believe it works, then it works.  *I* don't know if it works.  (On the other hand, we are all three transplanted in a very short amount of time, so maybe prayer works.)

So here I am in rehab, walking laps, shortly after New Year's, experiencing what can only be called an unqualified success, yet frustrated and anxious to the point of tears and depression because I can't do a thing to bring my sisters along with me.  I can't call my transplant truly successful unless Piper and Denise's transplants are also successful.  Until I see them both in rehab, both preparing to leave Durham once again strong and healthy, my own recovery will be missing a piece of the puzzle.  And this is the only piece I can't control or affect in some form.

All of this makes me angry.  All I can do is channel that anger back into my efforts in rehab.  I walk laps faster, push through the pain.  30 laps in 25 minutes. A mile and a half.  The therapists are impressed, but I'm not.  All I feel is impotent.

The Walls

Pulmonary Rehab Day 39. All in all, it's just another brick in the wall.

It was a clinic day for a lot of us. The NY crew Denise Horgan, Piper Beatty, and myself) were all there at the same time. We even got a quick picture together.  I think I will treasure this picture of us long after all of us are transplanted and back home. We're all smiling, though Denise's smile and mine can only be seen by our eyes; we're wearing masks. Piper has a commanding position from her wheelchair, while Denise wields her IV pole like Gandalf's staff. As for me, I have my hands on my hips in a "come at me bro" attitude.

But then we had our appointments and got a fresh look at things. Denise has hit a wall: waiting for a liver doc to weigh in on her case, an intractable chest infection that she's being re-admitted for, and still not listed. Piper has hit a wall: can't get in enough calories by mouth so she's sucking them in with a g-tube and she can't get enough CO2 out, so she'll be learning to sleep with a bipap to blow the CO2 out at night. As she puts it, "late-stage rejection both sucks and blows!"

As for me, my wall is also CO2, and a lung infection that, this time, doesn't even show up on the sputum cultures! The IVs have barely made a dent, but we'll continue them through Friday. Worse, my PFTs weren't great. My FEV1 hasn't budged, but my FVC has plummeted from 60% to 51%. Possibly the most telling is that while waiting to do the arterial blood gas, off oxygen, my sats hit 87% sitting quietly in just under 9 minutes. I've never dipped below 91% in 15 minutes in that situation.

Today, we each of us got a fresh hard look at the walls we face. But looking at that photo, I'm reminded of how tough we are. This is a picture of a crew that's going to fight to the bitter fucking end, one way or another. Never give up, never surrender. We will surmount any wall placed in our way.