Destination Unknown

Post-transplant day 865.  --Destination unknown.--

For the first time in my life, I have no idea where I’m going.

Duke Admissions February-March 2016.  February 18th thru 23rd for 1) high creatinine detected by both UNC [4.7] and Duke [4.9] on the 16th and 17th, respectively; 2) high blood pressure, noted on admission; 3) blood in stool.  Late night admission; immediately given IV fluids.  Creatinine drops over a few days until 2.5 at discharge.  Consults, medicine changes throughout stay.  Attempts to control blood pressure w/ medication changes complicated by changes to meds prompted by advanced kidney damage.  Finally settle on DCing metoprolol, re-starting amlodipine at half strength, and added carvedilol and hydralazine 3x day.  Fosamax DC.  Calcium cut to half. 

  -- from my notes

Throughout my life, I’ve been able to hazily foresee my future, or possible futures.  I could tell where I was going to go to college, where to grad school, what occupations I’d make a life of.  I could predict the course of my disease to a great degree up to and including transplant.  A life of a transplant has its own divergences, beyond the infections, sinusitis, lung collapses, hemoptysis, liver disease, kidney disease, pancreatic insufficiency, malabsorption, and diabetes I’m already familiar with.  New maps have had to be called up - new skills learned, new possibilities considered.  Many are mentioned, but the big one we all mentally prep for is rejection.  As yet, I have no experience with that.  I have, however, experienced multiple lung infections, a marked increase in my kidney disease, and the onset of hypertension and anemia.  Still - I can handle these.  They were on my map as possible parts of the journey.

What has taken me by surprise, though, is a diagnosis of cancer.

Felt pretty wiped out upon discharge.  Still having bloody stool and headache.  But blood pressure and creatinine under control.  Spent February 24 at April’s.  We talked and decided that the bloody stool hadn’t been addressed with seriousness - plus it was getting worse.  Back to ER in the morning of 25th.  Spent all day there; started Miralax prep 8pm finished by midnight.  Moved to 9327.  Colonoscopy the afternoon of the 26th.  Preliminary results back by 6pm.  

A 5 cm mass has been found in my rectum.  Biopsies were taken and will be studied…soon.  April spent the night with me - tearful, angry, frustrated with me (partly) and the system (mostly).  She’s smart as a whip but she doesn’t know how to redirect her emotions well.  Probably best night I’ve ever slept with her, though, even on that twin-sized hospital mattress.

I just have very few reference points to help me navigate this.  I am depending more on the doctors now than at any time before, as my close friends and family also have little experience with cancer or modern treatments for it.  To keep up with the journey metaphor, the atmosphere has become rather hazy, yet I have no choice but to keep moving forward - blindly.  Even the doctors have been very careful as they move forward.

Spoke to Dr. Thacker, surgical oncologist.  She said biopsy and CT results in full are still pending, but the first look at the CT gives enough information that they need MORE information before proceeding with treatment.  She says the mass is “rectosigmoid”, meaning it appears to be right at the junction of the sigmoid colon and the rectum.  Her diagram on the whiteboard was very simple and very dismaying.  This means more testing - probing really - is necessary to determine exact location, etc.  Because if the tumor is located beyond 15 cm in, we go directly to surgery.  If it is located before 15cm, and encroaches on rectal tissue, then oral chemo and radiation.  The oral chemo is designed to make the tumor susceptible to radiation, which is to shrink the tumor.  And THEN surgery.

The surgery went well.  I have a few new scars for it and some lingering problems with bowel movements that I won’t go into here.  Trust me, you don’t want anybody cutting parts of your colon out.  

Fortunately, I’m not alone.  I have April and my family.  I have excellent doctors.  I have my belief I can overcome anything.  And cancer is a very different beast than lung disease or transplant status. Different enough that everybody knows what cancer is, the seriousness of it, and entire hospitals are built to fight it. 

If there’s one observation I can make so far, it’s that while “I need a transplant” or “I’m immunosuppressed” draws a blank with some people or elicits a confused reaction, “I have cancer” immediately meets with sympathy and understanding.  EVERYBODY has dealt with cancer, if not in themselves then in a close relative.  So I’m not surprised I’m getting good support from FB.  

But what does surprise me is the change in how I’m treated by medical professionals.  Until last Friday, I had the impression my “little” problems - hypertension and kidney disease - were boring, run-of-the-mill, and slightly annoying for the medical professionals taking care of me.  But a diagnosis of cancer? That changes things.  Tanya the PA on 7800, for instance, did a 180 from stony-faced, hella-competent professional, to compassionate, hella-competent, personable medical ally.  She told me a bit about her sister’s permanent colostomy and her own fight against breast cancer and mothers who are more of a complication than a help (in these situations).  We had a couple long, good conversations before my last discharge.  I hope I can count on her this weekend to help keep all teams coordinated.  I’m not going to have the humour or patience to deal with people who won’t listen to me or to each other.

Cancer has already changed me permanently - physically, chemically, mentally, socially. Cancer is a veneer that changes how people see you.  And, I suspect, changes it just as permanently.  I know I view my acquaintances who have survived cancer with more awe than I did before, like Susan Hilferty.  So now I’ll be “that” guy - all over again.  If it's pity, my friends can save it.  I only need their understanding that I have a new normal, even farther from center than before. 

This post has been extremely difficult to write.  I’ve been mulling over what I wanted to say for over two months.  But tomorrow begins a new phase of treatment - chemotherapy - and I felt I needed to get down on paper what has been stewing in my brain so far.  I realize that I have dodged bullets at every turn.  The tumor was located just far enough in to treat primarily with surgery, immediately.  Chemo is up to bat as cleanup; primarily because the tumor was Stage III, I had a small amount of metastasis, and I am, after all, immunosuppressed.  Things could have been a whole lot worse and for that I am thankful. 

 Things may still go sideways, but for now, I’m OK. What I keep coming back to is my ability to cope.  These last two months, I have repeatedly reminded MYSELF that I’ll handle this thing like I always have: calmly, with deliberation, and with dignity.  

Survivors and Heroes

Post-transplant day #685. Survivors and heroes.

There are just some days where I am absolutely humbled. Times when the face of true grace is revealed to me, when something divine is on display and if I pay attention, I'll learn something about what it means to be human. It happens in the people around me, when some occasion strips away the patinaed armour of life that usually hides people's true selves and I can see underneath -- and meet and come to know -- those individuals for whom "every man for himself" is an antithetical notion. This was one of those days.

LiveOnNY threw a luncheon to honor donor families; and they made sure there was a recipient at each table to represent our ranks, say thank you, and honor their nobility.  (And nobility IS the word - for they did the right thing at the hardest of times.  When your world is crumbling around you, saying “yes” can be monumentally difficult.)  And so I attended that luncheon, meeting many donor families, and in particular the five families that sat at my table.  

This was not a black tie affair, but a suit was appropriate; and it was held in one of the ballrooms of the New York Marriott Marquis Hotel in Times Square.  Many of these families traveled quite a distance to be here.  All of them were somewhat subdued and, I think, a little shocked at seeing so many other donor families, as well as getting to talk with so many representative recipients.  I can’t blame them - they had lived through a difficult, extremely stressful time of their lives during which each made the decision essentially in isolation to donate their loved ones’ organs.  Being approached in the hospital, during the final hours of a family members’ existence (once they’ve already been declared brain dead, that is) is a horrible time to have to make a decision that could potentially affect several other people’s lives - and yet that’s exactly what must happen, especially if that decision hasn’t been made and discussed long before any need for it.

One of the more interesting series of speeches of the afternoon was from two donor parents, Frank and Kelliie Cutinella.  You may remember their son Tom died after a fatal hit in football one year ago.  They were gracious and intelligent people.  And while we mourn the loss of a bright young life like Thomas’, we can all celebrate the lives saved by his organs - because this lives were standing on stage with them!  Three of the recipients were there, including a heart transplant, kidney transplant, and kidney/pancrease transplant (which is fairly rare).  I can not imagine a more graphic way of describing the direct benefit of the slogan “live life, then give life.”

The heart recipient, a vibrant young woman named Karen A. Hill, received Tom’s heart on October 23rd last year.  She made a great point about the relationship between the clouds and the silver linings of this existence.  "A world without disease and hardships would be a world without survivors and heroes.”  I hadn’t thought of it quite like that before.  

Also speaking this afternoon was an acquaintance I’d met shortly before I left Durham - Rosemary Hargaden.  It was as if she was my a mimic of my own inner thoughts, taking the prayers and dreams and gratefulness I feel from the world of the ethereal and making them concrete with words of thanks and illustrating what it means to be living again.  Personally pleasing to me was this sudden reunion with another NY-to-Duke CF double-lung recipient. There’s a small but steadily growing club of us.  A third one was there, too, though her name is slipping my mind right now.  But when I think of them, myself, Denise, Piper, Michael, and Jason, and the one orthodox guy who didn’t survive - I am so incredibly amazed with the graciousness of the New York doctors who may have lost our business, but did the right thing by referring us to Duke.

The afternoon ended with a medal presentation - each donor family received a gift box with medallions of appreciation.  My various families collectively lost two sons, two husbands, and a sister.  With a single exception, they all died of brain aneurisms, which makes me wonder if that’s the most common cause of death leading to organ transplant.  The one exception was one father’s son, one of twins, who at 17 was shot in the head.  This father seemed like he didn’t want to be there very much, but his sister (the boy’s aunt) very much did.  So I guess what helps one person grieve just makes it worse for another person.

I’d have liked to have a transplant doctor or surgeon speak - they’ve seen the vast amount of good transplant can do and rarely get to speak to or thank the donor families themselves!  They could also help deliver a message that needs to be stressed:  that though the hardest part is over, the journey as a donor family never ends.  You will always be an example of what it means to Do The Right Thing, true altruism in an age of true selfishness, and one of the best ways to honor your loved one is to push others to become registered donors, too.  For beating back the darkness is the task of all of us involved, flipping the story to the point where organs outnumber the need is the Olympus we must climb, yet can’t climb it individually.  It must be a team effort - donor families, recipients, doctors, and volunteers, all roped together.    

But perhaps this soapbox is best saved for another day.  I really just wanted to write to say thank you to the donor families - those who attended today and those who didn’t.  The families here in New York and the families in The Triangle, and the families all over the world.  

Today I was reminded that life goes on even after our passing, a life where our loved ones bravely soldier on, advocate for the next ones down the line, and almost without meaning to become survivors and heroes.

Forward

Post-transplant day 611.  Forward.

I made a new friend last week at my local gas-station.  Now I know most stories that begin like that don’t usually end well — usually with waking up in a bathtub filled with ice in a dingy hotel and a freshly MIA kidney — but this one is only in its first chapter.  I kinda hope the story ends up being dull, routine, and anticlimactic, for my friend’s sake. 

So before I elaborate further…let me back up a bit to where my thoughts have been since getting back to 100%.

My rank and status in the field of combat may have changed, but the battle rages on.  Today, at 20 months out, I am in some ways healthier than I’ve been in my entire life, but in others have a lot of catching up to do to 33-year-old me, the one that ran the Flying Pig.  I can keep weight on and good lung function (“lungction”?) up, but I struggle to get my legs under me.  Such is the nature of getting older I guess.

But in this suspect maturity, and in moving on from the biggest crisis of my life, I find myself wanting to make my life count for something more than average.  And volunteerism is the way to do it; at least for now, for when I don’t have time to go on multi-week epic adventures. I’ve gone through volunteer training with Live On NY, lower-NY-state’s organ procurement organization.  These entities, the OPO’s, are the official state-by-state registries and organ clearinghouses brought into being along with the federal oversight board, OPTN (Organ Procurement and Transplant Network) via the National Organ Transplant Act in 1984.  I am officially part of the enormous machine of people, laws, history, cause, and effect that saved my life a mere 611 days ago. 

April and I have already been out manning a table at an event.  We didn’t get many people to sign up, but we were working with an historically difficult demographic to get signed up and I think there were a few we reached who now will more readily sign up when approached again.  My next gig will probably be a four-hour shift at the DMV.  Better find my #1400 t-shirt!

But this kind of volunteerism is somewhat impersonal.  Though April and I can readily help strangers put a face and a name to organ donation by telling our stories, we nevertheless remain strangers.  But there are people out there who are not such strangers — and we must stick together.  I would like to tell you about two people I know whom I’ve been talking with; people who need new lungs and whom I might be able to help.  Owing to general traditions of medical privacy, I won’t use their real names until and unless they give me permission.  They’ll know who they are when they read this. :)

The first is a friend of mine since we met years ago at a fundraiser she used to throw annually for the Cystic Fibrosis Foundation.  She was a powerhouse then.  Today, she is looking a bit deflated and is very sick.  She is in the process of getting listed at NY Presbyterian for a double-lung transplant (of course).  Earlier this year, when we began talking on Facebook and then over the phone about her status, it dawned on me that she doesn’t have the kind of support I had, and knowing what I do about NYP’s requirements, if she has any hope of getting listed, she needs Support.  At least two, maybe three people who will commit to staying in New York once she’s listed and waiting and to providing care before, during, and after transplant.  I’ve seen for myself how draining this role can be, having watched dozens of mothers, fathers, wives, husbands, and children shepherd their loved ones through transplant. 

When we came to that point in our conversation…parents? sister?  boyfriend? all unsuitable support for various reasons…. well, it took me less than a heartbeat to offer my full and unconditional support.  I’ll do everything.  I don’t want to see her turned down just because she doesn’t have stabile enough Support - how absurd would that be?  And yet…I’ve seen it happen.  And so, it’s my turn to cook, clean, chauffer, change dressings and IVs - whatever’s clever, man.

And to be completely honest, I do this knowing that I put myself at some risk.  She does have CF, after all.  But we both wear masks and use hand sanitizer liberally, etc.  She has another support person, but that lovely woman lives near the hospital, not out here in Brooklyn.  So she works on getting accepted, and we all will work on laying plans and contingency plans.  In the meantime, she knows she can call on me anytime, 24/7, for anything.  I’ve walked far more than a mile in her shoes; I don’t want her to experience any more hardship than necessary.


We've already been to her first meet-and-greet with her assigned transplant pulmonologist.  It was a long and informative day, to say the least.

The other woman is my new gas-station friend.  I know, I know…just…bear with me.  So I turned around from getting my change after purchasing some Gatorade and I see a woman waiting for the ATM with her kid.  She’s on oxygen.  I can’t resist striking up a conversation in the most awkward way possible.  I sidle towards her and she asks if I’m waiting for the ATM and “No, I’m waiting to talk to you, actually” just dropped out of my yapper.  So as I’m mentally patting myself on the back for my suave and subtle introduction, something clicked for her faster than for me and she asked if that was my car parked outside.  She said she’d noticed the Donate Life plates before, since she lives in the area (quite close as it turns out) and was I the person with the lung transplant?  At the same time, I was asking her, “is that LIQUID oxygen you’ve got there??” (Unbelievably, because the companies won’t take new liquid O2 orders - only for existing customers.) Yeah, we had a few things to talk about.  She’s been on O2 for five years - and may have another five years before she finally, really needs her transplant.  Despite that, she is in the program at NYP, attends the meetings, etc.  She talked about the difficulty of always having someone attend with her - and of course I gave her my card and said she could call on my anytime.  I’d be happy to help her fulfill her requirements.  As with friend #1, I am more than happy to lay out time and energy for friend #2.  People did for me, after all.

We chatted a LONG time.  I think the bodega owner was getting sick of us.  But eventually I had to get on with my day.  I hope we have a chance to chat again soon.

So is this a “Pay it forward” thing?  Or just paying it back?  I don’t know.  I hope that my efforts bring honor to my donor’s spirit and maybe a little peace to his family; that the coffers of human kindness that have sustained me and the cocoons of love that have protected me are refilled, repaired, and ready to restore another soul. 

Today, at 20 months, I am reminded that while I can never fulfill my debt to my donor, I CAN fulfill my obligations to my fellow humans - *explicitly because* my donor made it so. 

100%

Post-transplant day #500.  100%

I had a great checkup yesterday, 499 days after my transplant.  Several tests and several doctor consults.  The upshot is that I haven't been this healthy in many years.  My PFTs, the OFFICIAL ones, not the ones off my SpiroPD, have significantly improved: I'm at 96% FEV1 and 96% FVC.  I am so close to 100% on the numbers that it doesn't even matter.  Functionally, I'm there.  100% operational. Green lights across the board. Sure, it could all come crashing down around my ears in a week, a month, a year; it's a constant, but managed, risk. That's transplant life.

On the day-to-day level, 100% means I can work efficiently throughout the day, moving from one task to another, without the huge amounts of rest I used to require between every task, even mental ones.  It means I have energy enough at the end of the day to go to the climbing gym for an hour or go jogging for 30 minutes.  It means I have enough energy and strength to break in my new motorcycle with a 1500 mile trip.  It means that while I'm in the Triangle dealing with medical stuff, I still have the time and energy to give my girlfriend her due attention, go out and catch up with friends, take my Mom to an appointment, work on a refinance, and start a light plot for the next play I'm lighting.  All while living out of a T-bag.

What 100% means is that I can once again juggle all that I need to.  It's delicious.  I hope it lasts.

#500 has turned out to be memorable and special without forcing it, beginning with a long ride up to Winston-Salem last night (with April​ and Karen​ leading in April's car) to meet my friends Greg Williams​ and Alice Neff​.  We ate at Bib's BBQ - an adventure in itself - and talked over old transplant topics and where to go from here.  As a founding member of the LRLR, this year's ride is the next Big Thing on my list.

This morning started with phone calls and texts at 8 in the morning and hasn't let up.  But I got to start things off right with a nice breakfast at one of my favorite breakfast places, Another Broken Egg, with sweetie and my friends Pete​ and Jen Eisenmann​.  They have just finished moving to this area in advance of Jen's inevitable final decline and lung transplant.  It gives her time to focus on her health (she's already back to using oxygen part time instead of full time), get to know the various CF and transplant programs in the area, and make a new home in a very hospital part of the country.  I've broken bread with Jen before, but this was my first time meeting Pete, who has been an avid supporter of my athletic efforts over the years.  Lots of coffee and lots of laughter.  Quite the morning!

A couple hours later and I was opening the door to a mortgage closer, a notary public who makes sure everything gets signed.  I think I wrote the long form of my name a couple hundred times.  But it is done.  I am refinanced at a lower rate and saving hundreds on each month's payment.  It takes being at 100% to even start a refinance, much less hang on through one.

To cap off my day, sweetie and I rode over to Lowe's to have a copy of a key made.  That's right: April got on the back of my bike, suitably attired in my leather jacket, full-face helmet, and gloves. Coming back, she tried my half-helmet and liked it more. This outing was her first time ever on a motorcycle.  She's already looking at changes I could make to increase her comfort! I think the bug has gotten suitably under her skin.

So it is that on day #500, I felt the arms of my love wrapped around my waist as we rumbled through the pleasant outskirts of Raleigh. It's all I ever wanted, really. 

Is the long nightmare over?  While struggling along and enduring transplant, I often had to remind myself that "this too shall pass."  Today, with spring's bright dawns and a bright future ahead of me, I am reminded that ... well, it has.  And while this pleasant state may also change, will change....must inevitably change, it's worth breathing in the air and turning my face to the sun while I have the chance.

The Writing on the Wall

Post-transplant, day #428.  The Writing on the Wall.

I have met my maker and returned!
What advice I'm giving
To all those living
Is just to learn what I have learned:
Life is dear! There can be no vict'ry in defeat.
If out-numbered, beat a fast retreat
To the nearest shelter and dig in!
When you live, then you win!

This last week has witnessed my triumphant, albeit low-key, return to the musical theatre lighting desk, with tonight being final dress of Blair Academy's The Mystery of Edwin Drood.  Those who know me know my affinity for good theatre, especially musicals, and that lighting those and dance performances pretty much constitutes my lighting career.

It is the rare straight play that doesn't get boring for me.  But musicals have a way of getting better night after night, production after production, becoming more familiar and worn and treasured each time I see one or hear the cast album.

They also have a way of getting under my skin and causing me to become an emotional wreck.

Case in point:  in the fall of 1997, while my girlfriend was living in Silver Springs and I was in New York, both of us for master's degrees, I visited her for my birthday and she surprised me with tickets to see Rent.  Given ticket prices and lines that stretched around blocks, I never got a chance to see it in NY.  This would be my first viewing of a show I knew almost by heart just from the cast album.

I enjoyed the show immensely, singing along with the cast mostly in my head, sometimes outloud to Kimberly's annoyance.  But then we reached my most favorite song of the show: Seasons of Love.

Now here I must back up to just a few months previous, to before leaving Springfield, to a moment in time when my main sport was climbing.  Towards the end of my last semester, my best friend Dave asked me to his room and then told me with tears running down his cheeks that our mutual friend and world-class climber, Chris, had fallen while free-climbing.  He was dead, his head cracked open like a watermelon on the rocks below.

You may think I was horrified.  You would be right.  But aside from shock and numbness, I couldn't process the loss of my friend at the time.

Yet in the middle of watching Rent in Washington, D.C., Jonathan Larson's lyrics washed over me and allowed a release of my grief like I'd never felt before.  By the middle of the song, I was bawling -- and I couldn't make it stop.  It took several minutes after the cast had moved on with the rest of the show for me to compose myself.  I don't think Kimberly ever understood the impact that a mere song can have on me, especially when it opens the floodgates of grief.

But now, having finished Drood, I have another tune that makes my emotions boil to the top; an anthem that ends the show.  In a deus ex machina ending, Edwin Drood escapes from the crypt his body was deposited in after his "murder" and describes what he learned as terror washed through him and he fought for his very life to get out. in "The Writing On The Wall".

You have no idea the sudden strength

That you feel within you,
The steel and sinew,
When fate stands smiling at arms-length.

The lyrics echo and reinforce how I felt prior to transplant; how the overwhelming majority of us feel I think.  We will do anything to survive.  And how those of us feel who are trying to encourage others to keep their head up and keep marching on in their recovery, no matter how hard and exhausted they are getting.

Scratch and claw for every day you're worth!
Make them drag you screaming 

from life, keep dreaming
You'll live forever here on earth.

I have read the writing on the wall,
And it's clearly spelled out
For those who've held out
That holding on to life is all.

Sometimes, though, someone can't escape from the crypt, can't cheat fate.  But of my fellow CF Warriors, not a single one has simply given up, simply laid down and died.  They fight strenuously with everything they have to the miserable end.  And in the last six months, we've lost a LOT of Warriors. From Kenna Taylor, who was denied transplant, to Jordan Wood, who had survived two double-lung transplants and spread the word about organ donation through his work in the church and elsewhere.  A few days ago, we lost the strongest fighter I've ever known, Eryne Shan.  Even with her dying breaths, she was asserting that she wanted to live.  And, of course, I am still deeply impressed with what one small girl, Ellie Levy, was able to do with her time here on earth and how hard she worked to survive.

Today, I am reminded that life is *always* worth fighting for.  Screw Death.  And I urge everybody approaching transplant who I'm in touch with, from Jen Eisenmann to Janine Ulyette, to gird yourself for the fight of your life; to ready yourself to tackle the worst things imaginable if necessary.  Because I want to see you come through this and you deserve the extra months and years coming.

If you hear my voice, then you're alive.
What a bloody marvel we survive,
When you think of every risk we face
In our mad human race!

I have read the writing on the wall!
Try to live forever
And give up never
The fight - you'll need the wherewithal!
Can't you heed the lightning
As I plead. Inciting you to read 

the writing on the wall!

source: http://www.lyricsondemand.com/soundtracks/m/mysteryofedwindroodlyrics/finalethewritingonthewalllyrics.html

You make the difference.

Post-transplant day #393. You make the difference.

One life ends, another begins again.

A CF woman named Amy Mars Young passed away today at the age of 50 - a full 20 years beyond her own first end-of-life experience, thanks to organ donation. The lungs she received were able to give her, her friends, and her family 20 more years of love and living. Keep in mind lung transplantation was still in its infancy then - and she lived TWENTY MORE YEARS. That's a generation! What an excellent run!

Another organ donor recently passed away and in so doing saved the life of another Columbia-to-Duke CFer. My transplant friend Joe, whom I met the last time I was at Duke and whose mother Theresa I've been texting with, got his lungs yesterday morning. He's already off the vent and walking. I hope things go as well for him as they did for me.

In the meantime, I continue to pray for Heather James. She's experiencing a protracted recovery, slowed mostly, it seems, by an inability to ween off the vent. It's been two months and she's still in ICU. I just want to yank her out of there and take her on a brisk walk with me.

All these lives - my friends, friends of friends, myself, my love - have all been given new life...by strangers. Without exception, all of my transplant friends have been pulled out of the path of death by the simple gift a stranger made years ago - or yesterday. If you're going to die, you're going to die, as we all eventually must - but it doesn't mean your organs and tissues have to. You can be the autumn leaves that fall, rot, and are permanently gone, but which help push up next spring's blossoms.

Do you know that as I've driven around NY city in my little car for the last eight months, that I haven't seen a single other Donate Life license plate? New York State has one of the lowest rates of donor signups; one of the reasons behind the long transplant waiting lists here. It doesn't have to be that way.

I'm sure all of YOU have signed on the New York state donor registry and let your families know your wishes. But as I enter my second year, I entreat you to pass the stories I have told along to your friends and coworkers; people who may have no intersection with the world of transplant at all, but who, if they just understood the impact becoming a donor has, could make the difference between life and death.

Today I am reminded that as thankful as I am for the lives saved so far, we still have a lot of work to do.

A Short Odyssey

Post-tx day #375. A short Odyssey.

I had planned a 2 week trip.

It all started right, driving down to Raleigh overnight after seeing Sideshow on Broadway, arriving on the 26th at April's, where I caught a few hours sleep, and then together we traveled on to my brother Marc's place for Thanksgiving, which was quite nice. (Marc and Sophia cook up the best turkey I've ever had.) It was a nice couple of nights there, then back to Raleigh. There I took a hard-earned vacation, playing the role of house-husband to April as she finished classes and started finals. I also visited Heather James regularly, as she is still in ICU following her transplant in early November.

But trouble was in the waters. I'd been coughing a lot lately, feeling junky, bringing up the green stuff we CFers know all too well. I was ordered to get labs drawn early, on December 5th. Many values were out of range; some newly so. Also, the people who love me had been gathering their arguments to help me insist to my doctor that I get the P.A. knocked back with orals or IVs...*something*! My cough did NOT sound like what a transplanted person should sound like.

And so, with the help of Calypso -- uh, I mean April, I was deposited at Duke early on the morning of the 10th for my one-year checkup. Labs, PFTs, chest Xray, then consults with Dr Reynolds and Dr Wolfe. A sharp turn of treatments was discussed and scripts sent out, among them a change from tacrolimus to cyclosporin, in an attempt to control my tremors. Of course, neither doctor had yet the benefit of having results from my bronch, which was scheduled later. So some things were guesswork, such as assuming I'm not in rejection (and it turns I'm not anyway). We talked to both doctors about a plan for going on IVs. Reynolds didn't see the need, mostly because he couldn't see my lung infection on xrays nor hear it. Wolfe was more direct and weighed the benefits and risks of more hickmans vs a port at about 50/50. Take note of that. It is about to become very important in this story.

That evening, April's family, Mom and I, my good friends Greg Williams and Alice Neff, Jim Keefer, and Lauren and Mark James came to a celebration dinner for April and myself, it being a year for both of us. Along about desert time, another guest arrived for a moment: Brian Levy, master of the winds.

Earlier, I had heard that he was in town, packing up the last of Ellie's belongings. As that must be a miserable task, I thought maybe he'd like a nice dinner and invited him to join us that night. He said he could drop by only briefly. And so he did. Introductions were made, etc. Before he left, he hugged me and I him...and then we hugged each other a bit tighter.

For me, everything stopped. I don't know how Brian feels about it, but for a moment I wasn't just hugging the grieving father of one of the best transplant friends I'll ever have, but I was hugging Stacey too. And hugging Ellie herself. And hugging Manda Thom and Kenna Taylor and hugging Jenna Rose and Brian K. Johnson and all the other CF friends I've lost all the way back to the first one whose funeral I attended, Richard Shannon. I was hugging their grieving spouses, their children, their parents. I was hugging all those people who mean so much to me, but am otherwise so powerless to comfort. Brian was the outer shell of a matrushka doll of memories and patients and caregivers, containing all within.

Shortly after that, the evening turned on a dime. I began to get sick. And by the time April and I were leaving, I just turned to her and asked "Do we get Anticlea to vote on this, or do we just go directly to the ER?"

I had been explicitly told by Dr Todd, who did my bronch, that if the symptoms of my previous post-bronch illnesses showed up, especially the shaking and chills, I was to go the ER without question. And that began a not-wholly-unexpected hospital admission. At least I didn't have to go to ICU this time. Before I left the ER, my temperature had begun to climb even as I still shook with chills. I'd also lost my ability to void. My blood pressure started to rise and fall unpredictably. All part of the pattern. It's a form of minor sepsis from the biopsies combined with lethargic recovery from anaesthesia.

My first night, on 9300, was miserable. I was introduced to two types of urinary catheters I hadn't seen/felt before. Sleep was almost non-existent. This is how a hospital works. By the time I was moved to 7800 after less than 36 hours on 9300, I'd enjoyed four blown peripherals and the musical stylings of a guitarist named Steve. He actually was quite good and the music was relaxing. All part of the Arts In Health program at Duke.

7800 was better. I spent six days there walking laps, looking at walls, listening to the charming music from the hammer dulcimer player who came to visit, putting me under her spell. Lots of tests, Xrays, and meds. A few visits from endocrinology. But, mostly, thinking about Ellie. Replaying memories so they won't fade. Taking a peek at her memorial picture, which will soon hang on the walls, and starting to come to some peace with her death.

Dr Snyder, whom I like very much, was attending for the weekend and she takes the "what is making my patient sick" mystery very seriously. SHE heard my cough! Plus, a nasal swab turned up MRSA in my sinuses. My IVs were changed to sterner stuff and time in IR was requested. Dr Todd was my attending the rest of the week. Under her watch, I got a port placed on Monday, which was a TRIP. A whole story in itself. She didn't let me go the next day because I was running a mild fever and she was taking no chances, given my previous history. I finally got out Wednesday evening. Thankfully, Mark James, Heather James' father, was able to pick me up and take me back to Raleigh. He was patient and helpful as we had to pick up meds at the specialty pharmacy, and then went on the hunt for a nebulizer. Mark is another one of those people in the CF world whom I think I'll forever be friends with. The whole James family has become next-to-kin.

There is more to the story, details and sub-plots, you know, but I won't dwell on them now. I spent a whole day resting at April's. I was exhausted. Yesterday I packed up, wondering where all this STUFF came from and headed north, where I overnighted -- at April's! This time outside Philadelphia. First time visiting the fam on home ground.

It was an unexpectedly long journey, with the Fates perniciously plucking at the tangled skein of my life... but here are my cats and my awesome tenant, and so many friends...

Tonight I am reminded that home is where the heart is; as long as your heart is not lost in the whirlpool of memory or eaten up by grief. Crawl up the slope of the shore, slay your enemies, claim what's yours, live your dream. Peace.

Muddling through

Post-transplant, day 374. Our troubles will be out of sight.

A year ago tonight, I walked out of Duke hospital, stitched and stapled, hacked and hurting, but transplanted, alive, and walking. Oh, my donor, thank you.

Two evenings ago, I was again discharged from Duke, after a week in the hospital. I won't go into the whys and wherefores, but it boils down to this: if there is sedation and biopsies, then there will continue to be spells in the hospital immediately after my bronchs. It appears to be a fact of life.
While in the area and in hospital, I had time to see friends, both in and out. I was glad to catch up with Jason, who has become so strong in rehab that they’ve taken him off the transplant list indefinitely. He’s even off oxygen most of the time. But most of the friends I caught up with were in the hospital; not outside, not healthy.

I am beginning to get a little too familiar with 7800. Down the hall, in one of the six ventilator-support rooms of the ward, I found my oldest online CF friend, Lori Moriss, who was already talking about leaving, as she's on the tail-end of an exacerbation. She’s on ventilator support permanently and is not eligible for transplant. But she has spurred me onward and it was wonderful to talk with her through her doorway. There was also Christy Hubbard Hamilton, much to my surprise. She, too, was wrapping up a hospital stay for infection and left before I was discharged. Good catching up with her.
What most surprised me was finding Miranda Fae still in 7800. She is a re-transplant and has been recovering for five months so far. I had figured she’d be long gone by now. She had such energy and worked so hard in rehab before transplant. But this transplant, she says, has been as hard as her first one was easy. Night and day.

Of course, I visited Heather James several times over the last couple of weeks, trying to buoy her spirits. Her recovery continues, though slowly. She is basically tied to her hospital bed with tubes and wires, except when walking laps. I hope she’ll be moved to stepdown soon. One day I stepped out of my room to walk laps and was completely surprised to find Heather had come to visit me! In a wheelchair, surrounded by equipment, nurses, and her family -- I can appreciate the effort it took just to get off her ward, much less come over to Main to see me. It was the best visit of my admissison.

The rooms of 7800 haunt me somewhat, knowing who stayed where and for what reason. Just two rooms down was the room where I last saw Ellie alive. As I walked laps, I kept passing her room, expecting to see her in there. But no…just some other random lung patient whom I never saw out of his room. I was most pleased, though, to find out that the front desk has received a matted and framed picture of Ellie that her father sent and will soon put it up on the wall. In a way, I'll always know where Ellie is.

I think I needed this return to Duke to assure myself that there is a foundation that does not move, though the people we love float in and out of our lives. In the last few days, there have been a lot of deaths in the nation-wide CF community, including some acquaintances of mine. A couple were post-transplant, getting hit by rejection or cancer. It is a sobering reminder that we’re all in a continuing fight, that CF has no mercy, and does not take a break for the holidays. Being a CF patient, especially a transplanted one, means that our very best friends are spread far and wide and we see them seldom; yet when we do, we make the most of our brief time together and we never forget to say "I love you", for the next day one of us could be gone, our lives as easily blown out as a candle.
Tonight, I am reminded that someday we all will be together -- friends here and gone -- if the fates allow. But until then, we'll have to muddle through. Somehow...

Frozen

Post-transplant day 364. Frozen.

I've been off the air for almost two months. I've been busy with work, with life, with the end of life. And, I must acknowledge, there are some personal problems that are unresolvable right now and which keep me offline. Thankfully, I have April to keep me steady.

To my dismay, I must start this blog entry with expounding on egregious news. After months of me begging all of you to pray for Ellie, she did not recover. In the afternoon of November 5th, she breathed her last. Her death did not come as a surprise, but it's incredibly painful anyway. A week later, I attended her funeral in Miami. Her last boyfriend, Andrew, and I were the only representatives of the CF or transplant patient communities, as far as we could tell. I wish we could have given Ellie a Viking's funeral; it would have been more fitting for a Warrior.

Now, I've had friends die before, but Ellie's death has impacted me like no other. My world is absolutely shattered. Imagine yourself living in a world as big as ours, but fitting inside a blue glass sphere. Then imagine looking up at the sky and seeing cracks appear, then gaps, then jagged holes as large chunks of the world fall away into nothingness. This is how it has been for me since November 5th. It may not help that her death was hot on the heals of Friend Brittany Wood.

The unholy thing about making friends, especially in the CF world, is that you may have to watch them die. And yet to withdraw from the CF world (such as it is; connected mostly by Internet) is to throw in the towel, give up on part of the fight. I won't do that. How can I abandon my friends?

Speaking of friends, I was reconnecting recently with grad-school colleague David Martin. He and I had been talking about transplant via Messenger. We had tentatively set a day to get lunch, but medical problems got in the way. Not mine; HIS. David had a rare blood cancer, and he was going to get a bone marrow transplant. But for some reason nobody can figure out, he took a sudden dive November 11 and he, too, "stepped behind the veil" as one of his friends put it.

So with Ellie's and David's deaths still weighing me down, I came down to Durham and walked into Duke hospital, where it all happens. My last rehab friend, Heather James, is in the ICU there. (A recap: she finally, after 280 days of waiting, got new lungs and liver. She also had a bunch of other stuff done at the same time, so she won't be undergoing anything more than a sinus cleanout after she recovers.) Recovery is taking a while, but she walks a little bit farther each day and she inspires me with how much strength she displays. Heather got her call a week after Ellie's passing and I can't help but feel Ellie had some kind of hand in this.

And yet...I am lost. When the Duke nutritionist asked how I was feeling, I could only tell her that I'm parked in neutral. I'm not feeling *anything*. Like something inside is frozen. The only exception to that is my feelings toward people I love, but even those are a bit blunted.

Tonight, the eve of my transplant anniversary (I was actually being prepped for surgery right now, a year ago), I am reminded how fleeting our connections are. Love each other while you can. It's a wintery night out there, and I'm thankful that I get to cuddle up to my girlfriend and love her with all of what's let of my heart; keeping the emptiness, the frozen emotional wasteland, at arm's length for another night.

I will not remain silent.

Post-transplant day #310.  I will not be silent.

This last month has been unusually hard on the cystic fibrosis community, with a high number of deaths of both pre- and post-transplant cystics, and the death of the wife of the Cystic Fibrosis Foundation's COO. In response, there is currently a 65-hour silence going on in the CF community, with many of us abstaining from social media for that time, I think in an effort to get the world to see what it's like when so many voices fall silent.  But as Stalin said, "When one person dies, it's a tragedy; when a million die, it's a statistic."  So it would be if we all fell to the scythe at once. So I am not participating. 

I will not be silent.  I will not let my voice be suppressed, I will not let my voice be drowned out, I will not let my words be overrun by the blatherings of people whose most worrisome concerns are whether the potholes get filled or the trains come on time.  I will not stop talking about my cystic fibrosis, nor about other people's CF, as they choose to share it.  I will not keep my thoughts unvoiced when doing so means giving an easy rest to those who otherwise will not care.  In this society, with so many bits of minutia crowding each person's attention all day long, it is not just that my voice that can raise an important matter to the light, but can educate the unknowing, bring passion to the vapid, elucidate my fellow cystics' struggles, and, yes, even glorify our small achievements.

Most importantly, my voice gives some life to the dead.

Four days ago, another CF friend of mine, one I've known longer than average, passed away.  Brittany Wood was the same kind of CF Warrior we all inevitably become, fighting this disease tooth and nail until, sadly, it finally claimed her, casting her husband adrift.  Just days before her, Kenna Taylor, just a kid.  Why would I be silent about their deaths, when I mourn them as I mourn my own family??

And not only do I speak, but I don't just speak in the direction of those who are primed and eager to listen, my fellow CF Warriors.  Rather, I write and post so that YOU, my NON-CF friends and followers can live with me ... for a heartbeat. 

I speak so that you will feel what I feel...
I speak so that you will experience my distress.
I speak so that you will feel the rush of my endorphins.
I speak so that you will taste the same salty sweat from exertion.
I speak so that you will hear the same music I do.
I speak so that you will tear your hair with grief as I do.
I speak so that you will love the same way and the same people I have loved.
...I speak so that you will understand the world as a cystic does.

Today, Manda Thom passed away after a long, difficult battle.  I am devastated. She was 17 and had just gotten her new lungs less than two weeks ago.  I don't know what went wrong, but I do know this should not happen!  So how am I, one of the voices she leaves behind, expected to remain quiet in this sixty-five hours of silence??  The dead will fill that silence quite well, with no help from us.

Tonight, I am reminded of the need to speak and the need to do so regularly, forcefully, and both detail and volume if necessary.  I am reminded that while a movement of inaction, such as a boycott or sit-in, can have impact, it can only have impact if that movement has a voice to explain it.  Maybe I have missed the point of the Sixty-Five Hours of Silence; perhaps someone can explain it to me....in...another 35 hours.  Meanwhile....

I will not remain silent.