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.