Springs of Various Sorts: Gratitude for Transplantation

2016 was war. 2017 was peace. 2018 is euphoria.

Spring 2017

It was a historic rainfall in Silicon Valley, the likes not seen since the days of Noah and his big boat. Los Gatos Creek spilled over and the neighborhood electricity blew out — a true tragedy in Tech Titan Valley. Mom sparked candles perfumed with vanilla, and I gently yet stiffly laid on our comfy couch with a groan and a sigh. And closed my weary eyes. I was fully deaf since spring 2016 because of amikacin barrages, but the words (typed to me a few weeks prior) of my transplant mentor, Kathleen, whispered through my mind: “Rain purifies the air. It’s a transplant patient’s best friend.”

It was my first day back at home since my double-lung transplant two months earlier. The fentanyl withdrawals had washed away along with much of the physical and emotional hurt from the surgery recovery. I felt the tight, tight, tight muscles of my body surrender to the calm of the moment. And finally, while the world outside flooded, I soaked in tranquility.

The rain brought destruction, then beauty. I was reborn in union with spring. Wildflowers bloomed along the crooked cracks in sidewalks, a fresh burst of radiant petals each time I braved the outdoors for a strenuous “stroll.” Walking took maximal effort because of melted leg muscles. I literally had to re-learn walking after my septic shock several months earlier. Stairs were the ultimate challenge, but I was getting there. One step in front of the other. What is a new life without first steps?

Spring 2018

Yosemite National Park is really something.

Yosemite Valley flooded days before I visited it. The rain brought destruction, then beauty. The wet froze into crystal, which melted into wondrous waterfalls pouring from all directions; from colossal cliff walls guarding the crowned jewel of California. Mighty trees stretched their freshly greened fingers for the sky and animals frolicked in the fat bushes and along glimmering lakes.

The waterfalls result from melted ice funneling down mountain peaks. 

The Dell family and our friends of many decades rented a cabin for a few days. I’d seen one of the friends only once since my 2011 Make-A-Wish trip to New York City — as opposite to Yosemite as you can get. And I am opposite to whom I’d been then. I’m now breathing perfectly, hearing better (thanks to cochlear implants), eating plenty. “You didn’t eat a thing back then,” said “Aunt” Kerry as I devoured steak and potatoes, chased with boysenberry pie. I’ve been playing catch-up for seven years of barren appetite.

I also couldn’t walk far back then — not without griping about chronic back pain and wheezing. And I’d walked even less so the past couple years, before and soon after the transplant. But in Yosemite, my most intimidating physical challenge (outside of the medical realm) towered far, far above me: Vernal Fall. One hundred and forty-eight floors’ worth of hiking, according to my FitBit.

Hiking up the step-stones to the falls. (Photo by Rick Dell)

I climbed and climbed and climbed. At points, I clutched handfuls of my pants and hauled my fatigued legs over tall step-stones. I came to a thickly misty area beside the falls aptly named “Mist Trail.” I pocketed my cochlear implants and glasses so they wouldn’t get drenched, and paused for a long, magical while. I struggled to breathe, deaf and nearly-blind. It was how I should be, if not for miraculous interventions.

In that purifying misty oasis, it was just me, God, and my donor. Mist mixed with tears and wind kissed it all away. Two years ago, God swore He’d pull me out of my devastating storms — deafness and end-stage CF. It seemed impossible. But as with all strong storms, there was beauty at the end.

A rainbow stretched beneath the mighty cascades of Vernal Fall. A rainbow: the symbol of God’s promise to Noah, post-flood.

Vernal Fall and its rainbow. Vernal is defined as, “of spring.”

I nearly turned back — my sister already had. But my child life specialist’s Facebook message from the week before pierced my weariness: “You keep winning and overcoming struggles.” Those words were potent; since 8th grade, she’d seen me cry out in terror for mercy more times than I can count. She knows the raw reality of my battles. And she’d always calmed me, kept me pushing. I gazed through mist at the dozens of remaining step-stones leading to the top of Vernal Fall.

Veni, vidi … vici.

Atop the cliff, nothing could smear my smile, nothing could touch me. Numerous times, I’ve said that the brutal war for my life was “worth it” for single moments: at the edge of the Grand Canyon, in the depths of Antelope Canyon, atop the peaks of the Rocky Mountains. And now, above Vernal Fall overlooking the vast valley of Yosemite and its infinite gushing falls.

2016 was war. 2017 was peace. 2018 is euphoria.

Euphoric, atop Vernal Fall.

Follow my adventures on my Facebook Page, Adamantium Joy.

This was originally posted on my column, Victorious, at Cystic Fibrosis News Today.

The Sudden Smooth

The worst year of my life led to the best of my life. I am adamant in my belief that faith was the catalyst for where I am today.

(The image above was taken by Kathleen Sheffer. The left was weeks after transplant. The right was taken during the “sudden smooth” a few days ago.)


There’s this song, Oceans, by Hillsong United, that’s about holding on for dear life to God in the midst of life’s storms. Go ahead and give it a listen at the link — this is a long post.

There’s this part, So I will call upon Your name / And keep my eyes above the waves / When oceans rise, my soul will rest in Your embrace / For I am Yours and You are mine.”

Ah, man. It gets me every time. I choke up (dangerous when you have a lung disease) and my eyes, ironically, get filled with waves of tears.

In elementary school, I got my foot stuck in a piece of coral while at Shark’s Cove in Oahu. Being a lil’ kid, I thought a place called Shark’s Cove, naturally, had sharks. It turns out that the biggest threat was actually the tide. I was anchored down by the coral and the tide was rising, rising, rising. Up to my nose, almost to my eyes. I screamed, “HELP, HELP, DON’T LET ME DROWN.” These tourists were mere ripples away from me, on plastic floaties. They stared at me. Just stared. Indifferent. My mom shrieked for help from the shore, and … I don’t really remember what happened next, honestly. I’m assuming I survived.

My whole life was me trying to keep my eyes above the waves. It was always survival; the seas were never calm. And yeah, at times, I felt like God had fallen asleep to my prayers, as Jesus did in the midst of the storm in Matthew 8:23-26:

“Then he got into the boat and his disciples followed him. Suddenly a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. The disciples went and woke him, saying, ‘Lord, save us! We’re going to drown!’ He replied, ‘You of little faith, why are you so afraid?’ Then he got up and rebuked the winds and the waves, and it was completely calm.”

The disciples put their shaky faith in sails and wood to keep them afloat in the storm. I put my faith in a “magic” blue pill (Kalydeco) that I believed would save me, as it saved so many others with cystic fibrosis. When it didn’t work, I was sucked into this storm. I feared for my life. My foot was stuck in the coral of CF and I was drowning in mucus and tears. Mom was on a metaphorical shore, praying for me to be helped as transplant centers refused to offer their life rafts.

The answer for the disciples was right below decks, not in the sails or the wood of the ship. When they woke Jesus, He said simply: “You of little faith, why are you so afraid?”

Two years ago, so deaf that I couldn’t hear my own words, I screamed in fear to God, “DO SOMETHING. DO SOMETHING. DON’T JUST WATCH ME. DON’T LET ME DROWN.” But it was an outraged prayer, not a faithful one. I wasn’t ready to join Him. I loved the world more than Him.

And then I almost died and, as you’ve read many times before in this blog, I had an epiphany. Unlike in the story in Matthew, He was awake all along. I was the one who needed to open eyes. I rested in God’s embrace as He whispered that I was little, but there was no need to be afraid. “I just want another chance, Father. Please, help me. I don’t want to hurt anymore.”

Little by little, my fear seeped away, until I was on that operating room table experiencing the calmest calm. A calm calmer than I thought possible. I finally grasped a faith that could break a sea in two.

This was the evanescent eye of the storm. The waves returned and crashed, crashed, crashed. I faced opioid withdrawal, grief, a breakup. But the torrent eroded the remaining strongholds of stubbornness around my heart. I was learning to give it all to God. To accept that my faith in God didn’t make me a lucky Irish who would never be affected by bad things again. Rather, my faith gives me the strength to sing the mantra, “when sorrows like sea billows roll, whatever my lot … it is well with my soul.”

I stood by the sea in San Luis Obispo a month ago. It was calm.

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The sea that day.

I stood with my uncle and remarked that, today, I breathe better than I have since I was a child. That I hear better than I have since 2010. I made the remarks and realized I hadn’t realized that until I made the remarks.

Jehovah Rapha (The Lord that Heals) heard me and delivered in ways I didn’t think possible. After a whole life of storms, I’m mesmerized by the “sudden smooth.”

On Saturday, I had a “Lungiversary” party to celebrate the year since my transplant. I went from a year of near-complete solitude to telling a friend at the party that I was relieved not everyone could show up because my house was too packed.

On Monday, I finished a day of work in which I cried four times. Once, because I edited a column that reminded me of how torturous a life with chronic illness is. Pain memory is a root of gratitude for a new life of relative health. The second time because a writer thanked me for helping them with getting evaluated for a lung transplant — my journey continues to positively affect others. The third time because I edited the column of a parent whose daughter asked him if he loves having a child who is disabled. (His answer: “I love you.”). The fourth time because my friend wrote a poignant column about our transplant journey together. The job is perfect for me, and was only obtained after months of applying for several other less-perfect jobs whose employers didn’t even bother to email or call me back. God closes doors to open better ones, yeah?

My breakup is now history, and a valuable friendship with her remains. We both have gratitude for our past relationship because it was six years of only ever building each other up. I know God has someone perfect in mind for the both of us.

My health continues to be excellent. I haven’t had organ rejection or major infections. I am rock climbing and muscle training. In San Luis Obispo, I rode an ATV over dunes and a horse up a gorgeous mountain.

 

My hearing is better than I hoped for. It takes many people years to enjoy music with cochlear implants, but it all sounds completely normal to me. My audiologist is even enrolling me in a study about how cochlear implants perceive music! My dad gets annoyed because he tries talking to me without realizing I’m jamming to music (it streams directly to my brain via Bluetooth). I ask if he’d rather that I listen to lots of music or be deaf. He concedes.

If you study the Bible, you’ll know that Peter, despite seeing Jesus calm the stormy seas, eventually forgot His greatness — for a while, at least. He declined even knowing Jesus three times in a single night. I don’t ever want to forget what God did for me. I want to live like the man in Job 33:19-33 who is saved from the grave and has his body restored to youthfulness, then spends the rest of his days praising God for healing him.

God already made me healthier than I have been since my youth. Life is melodious, radiant, technicolor now. What I do with the rest of my days is my decision. I think I will choose well.

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My cousin, Jeremy Wells, made this for me. The background is Job 33.

 

I Declared War on My Disease — and Won.

I declared war against my cystic fibrosis after a lifetime of being a victim. One year ago, I won.

Is there a word for a phobia of dying in a hospital, of the disease you were born with? Medicladiseseamorbidiphobia?

I used to wake in the middle of the night, imagined visions fresh. Visions of myself lying in a hospital bed, dying while deaf — unable to hear my loved ones, too sick to read. Surrounded by the scent of alcohol prep and sweat, by nurses I didn’t know, by medical plastic and metal. Needles and tubes sticking out from every pore of my skin. Literally drowning in gooey globs of mucus.

I was always envious of those who say death doesn’t scare them. Some crave an afterlife more than their current life. Some are simply brave people. Some put up a tough act but secretly fear it. Others haven’t stared death in its eyes, stood in its shadow and felt small. They didn’t live life like a jug of milk whose expiration date was too smeared to read — but existent nonetheless.  And milk doesn’t last long, ya’ know?

I was rotting from the inside out, airways plugged by this disease’s literally-infectious tendrils. This disease that felt so stupid to describe: “My mucus is just too thick.” It was thick. It was so thick in my last days before transplant that I coughed up green-tan Play-Doh. You’d swear that’s what it was. When I didn’t wake from nightmares, I woke because I was suffocating.

I’m not sanitizing this post of the reality of cystic fibrosis (CF). It’s imperative that you realize its hold on my life if you truly want to understand why I continue to be baffled that I survived.

For 23 years, CF’s mucus-sticky fingers clenched my neck. It threatened my loved ones, my career, my finances. It intruded on my comfort, my mental security, my self-esteem. It paralyzed me with fear, mocked dreams.

It was the very-real Boogey Man when I was a child, hiding beneath my little rib bones. No kid should grow up knowing they have an expiration date infinitely shorter than their friends’.

I grew up hostage to CF, yet I didn’t know just how brutally it could pounce until, at 23, CF tightened its suffocating grip, squeezed the oxygen from my airways, vaporized the hearing cells in my ears, blew carbon dioxide into my brain, and poured poison into my bloodstream.

There I was. Deaf, tubes poking out, surrounded by stiff medical unfamiliarity, drowning in mucus. Dying.

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CF couldn’t ever actually hurt my loved ones, but it could turn me against them. It corrupted my mind with psychosis — an indiscriminate, Hulk-like rage unlike any I’d ever known before, directed at anything and everything. Including my loved ones.

CF could hurt me all it wanted to, but I refused to let it get away with hurting those around me. When I emerged from hallucination and psychosis, I ditched my victim mentality and declared war on CF — vengeance was mine.

When orchestrating biowarfare, masterful strategists (doctors) and tacticians (surgeons) matter. These battle-hardened titans of medicine looked me in the eye and emphasized their plan was risky. But that we would come out triumphant.

Just 5’4”, my surgeon was colossal in power and skill. She’s the type that radiates confidence without arrogance: “I will not do the surgery if I think the lungs aren’t perfect. You need to trust me,” she typed on a computer.

I looked at her and, despite my historic trust issues with a multitude of doctors in the past, nodded: “I know. I trust you.” I might have stuttered when I said it. We were talking about cutting me open, after all.

“I think you will have a very good long lifespan,” she wrote later.

After two decades of having life expectancies and survival rates crammed into my brain, this surgeon was envisioning something beyond CF. And yes, I trusted her, despite contradiction to what I’d always heard before then.

Meanwhile, a CF pulmonologist on the transplant team, fittingly named Dr. Golden, was preparing for a speech in Ireland, in which he’d present me as his “project.” He’d say I would soon be breathing, “and hearing, too!” He had a plan, my surgeon had a plan, the team had a plan. So, I planned — for a future.

Suppressing CF’s power over me, as we’d done for 23 years, wasn’t enough. We had to destroy it. I had my ravaged red lungs, corrupted by years of infection and inflammation, scraped from my chest and replaced with full-bodied pink lungs untouched by biowarfare. CF would remain a whipped dog in my digestive system, and transplant has its own risks. But CF was only ever lethal in my lungs. This would buy me a lot of time — “a very good lifespan.”

I just needed to wait for the call that lungs were available. My team waited for the same call. It was a call that would mean someone had died, “brain dead,” they call it. It might have been someone who didn’t know to fear death. Who hadn’t stared it in the eyes until then. Or it might have even been someone who embraced death for comfort from life’s woes. It was something I didn’t want to think about, but forced myself to. It was something very real and almost biblical: death for new life. I got the call, and I thought of my donor. And rarely have I stopped.

I always imagined the OR would be a grand opera of flying metal instruments and shouting. On Jan. 15, 2017, as I lay on the freezing operating table awaiting sedation, I snuck a peek at the surgery team: They were calm, collected. For them, this was another night on the job — they’re that cool. The surgery was likely conducted with murmured instructions and practiced precision, pierced by a moment of silence for my donor — as is tradition.

Before the surgery, it was, “No-nonsense, realize the gravity of the situation.” Since then, it’s been ohh’s and ahh’s with my transplant team because of a renewed life. One day, chaotic crisis can cut celebration. But, for now, I sleep deeply at night, knowing CF will not kill me.

(Click here to read about the two days leading up to my transplant surgery.)

Becoming Captain America

This is Part Two of my New Years Resolution. Although it’s more about the rest of my life rather than 2018.

Much of the time spent with my group of friends in elementary school revolved around running. Pretending we were on flying broomsticks, that we were in Sonic the Hedgehog’s world, that we were spies or ninjas. To be the coolest kid in school, you had to play a mean game of tag. I was the fastest kid, I swear it. All my friends would deny it, but I swear it.

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Me in 2012, 110 lb.

Of course, I wasn’t fast enough to outrun my disease. A wrench was thrown into my engine, or rather bacteria were breathed into my lungs. By middle school, my lungs were exhausted just a few steps into running, far before my leg muscles were strained. Have you ever tried working out with the flu or pneumonia? It was like that for most of my life. I don’t remember not having multiple major lung infections before my transplant. By high school, I was always last in the pack during gym class jogs. Walking.

In time, my small, youthful muscles wasted away along with any excess fat. I used to joke that I was a “walking twig.” If you know me well, you’ve probably noticed I use self-deprecating humor to cover my insecurities.

When I was undergoing the lung transplant evaluation, my social worker asked what my goals were post-transplant. I said I’d like to run again and mountain bike. My mom burst into tears.

I used the same self-deprecating, deflective humor with my family. I always came up with lame excuses to not go on hikes or do sports. Realistically, it wasn’t so much laziness as it was that I hated with every fiber of my being to be reminded of the limitations of my disease. Huddling over on a hike or mountain bike ride to cough my brains out, when I once climbed uphill without difficulty, was a stark reminder that I was dying. Many with cystic fibrosis push through that and defy their disease to become fit. I admittedly didn’t have the same mental endurance as they do. I gave up on my fitness.

So, my mom cried that day and said she had no idea I wanted to do those kinds of things. I tapped my legs in nervousness, flaps of skin on my legs jiggling like jello, where my muscles once were.

I got the transplant 11 months ago. And I’ve run a lot — to cafes, to grocery stores, around the neighborhood. I’m making small gains each time. My longest run so far was 1.5 miles. That might not be much in your eyes, but it’s a far cry from my slow march with oxygen tanks in tow.

25531862_10214673789542687_8940292069743692081_oWhen I had the surgery, my sternum was broken to fit the new lungs in. Between my sternum now being held together by wire and my bones being thinned by steroids, I’ve surrendered to the idea that mountain biking might not be the best idea. But I’ve taken up rock climbing and, man, that makes me feel alive. Pre-transplant Brad was too afraid to try things involving heights. But I’ve been through enough that I’ve been conditioned to leap into action in the face of fear. Yes Man-style. As my dad’s military buddies would say, “Hooah!”

I’ve caught the adventure bug. I need to be fit for those adventures. If Captain America went from being an asthmatic twig to a fit, fearless adventurer, I can too. Minus the supersoldier serum injections, ’cause that looked painful. I’ve been muscle training for about three weeks now without skipping any sessions. I want to be fit enough to endure my upcoming adventures without much struggle.

2017 was my year. I got the transplant, got cochlear implants, and reversed my kidney disease. I also got a new job and have been making plenty of friends. (I’ll talk about that stuff more in my next post.)

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But there were also many losses. I have a belt of notches representing mostly failures and a handful of [major] successes from the past year and a half. In 2018, I’m throwing that belt out for a fresh start. I’m hoping the new belt will mostly be notched with successes.

Here are some highlights from 2017!

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I have a “De-Bucket List” that was inspired by the past year. These likely won’t all be accomplished in 2018, but I’m gonna hit as many as I can.

  1. Learn to ride a horse.
  2. Boulder outside of a climbing gym.
  3. Run a 3k race. Then a 5k.
  4. Ski or snowboard.
  5. Try surfing again.
  6. Ride rollercoasters.
  7. Hike at least once every couple weeks.
  8. Visit Hawaii and do hikes that intimidated me.
  9. Go on a trip outside of California with (a) friend(s).
  10. Travel out of the country.
  11. Successfully set up the NorCal chapter of The Lung Transplant Foundation.
  12. Get more involved with the Cystic Fibrosis Foundation.
  13. Mentor a transplant patient.
  14. Join a ministry at church.
  15. Get my driver’s license (at long last).
  16. Move out of my parents’ house.
  17. Perfectly cook something extremely complicated.
  18. Finish my memoir.
  19. Feel good about my body: reach 140 pounds via a healthy diet and muscle training.
  20. Get to 100% FEV1 (lung function).

Happy 2018! Hope your holidays of choice were merry!

Growing New Teeth

Turning nightmares into dreams.

I’m on University Ave. at my old college. I wiggle a top-front tooth back and forth between my forefinger and thumb. Then spit the tooth out onto my palm. No blood. Just a tooth. Then spit out the two surrounding that one. Two more drop out without spitting. Then two more. Two more. Then my bottom row of teeth. I try to keep half my teeth in my mouth but accidentally swallow them. The other half bounce onto my palm and then fall through my fingers, roll under bushes and into gutters. I try screaming for help but I’m choking on teeth stuck in my airpipe. I chomp my jaw together and gums touch gums. No teeth left.

And then I wake up. And know I’ll have the nightmare again in the next few sleeps.

It’s a nightmare I consistently had when I moved to Seattle for a year. When I got my first editor job. When I graduated from college. When I joined the lung transplant waiting list. And now.

Conveniently, there’s a whole site devoted to interpreting this nightmare. I don’t mean DreamDictionary.com (which, oddly, leads to a Dell Computer sales site). There’s an actual TeethFallingOutDream.org. Apparently, it’s not an uncommon nightmare. Here’s what they have to say about it:

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I guess it checks out. Well, no anxiety-inducing sexual experiences, but the rest is legit.

Kristina and I broke up a couple months ago, after six years of dating. It’s something I’ve accepted and I fully support her decision. She’s been with me her entire adult life, so a need for self-discovery makes total sense. Heck, I’ve been with her my entire adult life. So maybe it’s time I discover myself as well.

We’ve mostly made life plans through the lens of the other. And everything needed to be rushed when cystic fibrosis was jabbing its tendrils into every aspect of life. Now I’m finally healthy and things don’t seem so urgent anymore. And we aren’t as dependent on each other. You have the vows, “In sickness and in health,” right? Well, we tested the torrid torrents of sickness. But health, ironically, proved to be harder for the relationship.

So, we’ve accepted the split. She will stay in Hawaii, I will stay in California. We’re still friends.

But life’s revolution has been knocked off balance. Most plans make almost no sense now that we aren’t life partners. In short, life has changed big time. Plans need to be changed big time. So the teeth thing makes sense. I have new lungs, new hearing, new friends, I’m at a new-ish place, and I need a new job.

Honestly, it scares me.

Funnily enough, the cheaply-made teeth dream website made me feel better. I really liked the latter portion of the TeethFallingOutDream.org webpage. It listed brighter perspectives on the dream:

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The Jungian interpretation intrigues me most. “Times of renewal and ‘rebirth.'” Isn’t that what transplantation is all about? Through the tough experiences (what I call the “grindstone of life”), my character has only sharpened. For once in my life, I don’t have to compete quite as hard for a fair shot at opportunities. New lungs, new ears, new health, new endurance.

As cliche as it is, I can’t avoid thinking of a phoenix — burned to ash, reborn full and strong.

Did I seriously just use the phoenix comparison?

New teeth will grow in. This isn’t a weak point, it’s my strongest.

On Commonality and Invincibility

We all breathed heavily. Some, a shallow heavy. Others, a deep heavy.

We all breathed heavily.

Some, because shallow breaths didn’t cut it anymore, courtesy of advanced lung conditions: ideopathic pulmonary fibrosis, cystic fibrosis, pulmonary hypertension, chronic obstructive pulmonary disorder. Diseases with enough syllables to leave anyone gasping.

Others, simply because we could. Because we’d spent decades or years or months in a slow-burn suffocation. But someone else died and so we lived. We breathe deep breaths of gratitude.

An assemblage of pre- and post-transplant patients from Stanford Medical — except me. Many have vertical incision scars (marks of Stanford) poking out from the collar of their shirts. The horizontal symbol of UCSF Medical, shimmery purple scar from pit to pit, is hidden beneath my flannel.

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A couple patients’ incisions are not yet scars — they have the telltale signs of weeks-fresh surgery. Eyes wide despite the bags sagging them down, legs frantically tapping out Morse code.

“They’re still drugged up,” I type out on my phone and show Kathleen beside me.

I remember the feeling. That I was invincible and life could be nothing less sweet than peaches and cream from thereon.


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Me, five days post-surgery: “This honestly isn't as hard as I expected. Kind of easy.”

Nurse, filling a syringe with heparin: “Patients often say that. At first.”

And then the fentanyl withdrawals hit me. Kathleen once wrote that she doesn’t congratulate people on their transplants. That she knows they still have a long way to go.

We’d met at a coffee shop in Haight-Ashbury a few days after I left the hospital in February. We’d first started talking when I commented on her blog a few months before. She got her heart-lung transplant after kicking back at pulmonary hypertension most of her life.

Kathleen typed on her phone about the difficulty ahead and I (still deaf at the time) tried to act chill about it. Act like I had a mind wrapped in iron defenses, no problems with my recovery. Around 3 a.m. that night, I swaddled my feeble body in thick blankets and sobbed. Gazed with heartbreak at the bottle of oxy. Recalled all the news stories about middle-class white men getting hooked on opioid painlifekillers.

Days later, Kathleen took me on my first “hike” post-transplant. My legs had bundles of lead strapped to them, I swear it. But we made it a good way up. The San Franciscan Victorian-style apartments below looked noticeably smaller and that was good enough for me. She told me we would only climb higher later on.

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Kathleen was right. Recovery was tough. And I now realize her withholding of congratulations was partly what allowed me to open up to her later about my struggles. I was fearful of people thinking I took the gift of new lungs for granted if I complained. I’d already had people imply I shouldn’t be anything but happy after getting such a blessing.

But Kathleen only ever gave me the straight-up. She understood that transplanted organs come at terrible prices: love affairs with opioids, crises of identity, and tear-blood-sweat-stained sheets.

And so we talked about death and psychosis and fear of dreaming. We talked about what others simply didn’t want to (or couldn’t). And we breathed heavily with each other on our hikes.


We are surrounded at Stanford Medical by many who take the same pills at 9 a.m. and 9 p.m. sharp. Who wear masks to protect fragile immune systems. Who don’t eat sushi or rare steak or pomegranate.

All of us, breathing heavily. Deeply and beautifully.

Two weeks later, I spent time with Kathleen again. We climbed 70 floors’ worth of height to reach the tip-top of Tank Hill. I gazed at UCSF below me, at the cotton candy-colored sky evaporating into dusk. Kathleen had said those many months ago on our first hike that there would be more to come. That it would only get easier. As usual, she was correct.

The next day, we'd meet other heart and lung transplant patients for a photo shoot of our scars. Days later, we'd learn prominent figures in the transplant community passed away. Kathleen would make me swear to live forever. I swore it, but we now both know exactly what we signed up for when we accepted those organic gifts. Like she said almost a year ago, it's a rough journey.

But atop Tank Hill, in that ethereal yet ephemeral atmosphere, I did feel invincible again (sans painkillers).

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Savoring Stress

Stresses then, stresses now. A little perspective to ease my mind.

I spent an entire hour stressing about which coffee shop to write at. I checked Yelp, checked bus time tables, made a bunch of sighing and “ugh” noises, wondered what my priority was: food, coffee, or atmosphere?

I got to the coffee shop and stressed about how my column wasn’t turning out as I’d imagined it would. The writing was clunky and unimaginative.

I transitioned to searching for jobs and stressed over how my qualifications weren’t good enough for the unreasonably high standards of Silicon Valley.

I checked out the average rent for apartments in the Valley and San Francisco and stressed over how I’d probably need to sell my kidney to afford living here (as if I haven’t lost enough organs — just take them all!).

I then stressed about how long it’s been since I had a fun adventure. I began planning for new ones.

But then I stopped and reflected on my experiences. And chose to savor these stresses.

Because last year, November 2016,

I stressed about not having a social life because of my deafness.

I stressed about being on the waiting list for a transplant because there was a good statistical chance I wouldn’t survive before I got a lung offer.

I stressed about dying while deaf and being unable to hear those at my bedside.

I stressed about choking in my sleep on great globs of mucus that filled my lungs overnight.

I stressed about diabetes and constant vomiting and IV drug side effects and the return of antibiotic-resistant superbugs that would make transplant impossible.

I stressed about not being able to begin my career to leave a mark on the world.

I stressed about how difficult and torturous recovery from transplant would be if I got the surgery.

Dread was the worst side effect of my cystic fibrosis.


Today, I stressed about normal-people things. Finding a job and being great at it, finding shelter, finding good coffee. Those problems are hard and real (especially the coffee part!). But I’m alive and my medical worries are at the back of my mind, in a cabinet collecting dust.

It feels darn good.


(Photo by Kathleen Sheffer!)

Celebrating victory with Princess Leia

Thank you, Leia, and thank you, Carrie — for helping me celebrate another milestone of victory.

Cochlear implants are a bit like a video game. As I grow more experienced, new levels/skills are unlocked. A sector of my brain’s auditory cortex seems to open up every couple days, allowing me to enjoy a new noise or song. I began with Johnny Cash, transitioned to Marina and the Diamonds, then Hillsong United. Then entire playlists. But the holy grail of music listening has evaded me: uh, Princess Leia’s Theme.

Ok, I understand the snorts and the raised eyebrows. But Princess Leia’s Theme is an ethereal piece of music for me. It makes me think of heavenly Cloud City and its tantalizing plot, of my childhood (Empire was my first Star Wars film), of the ineffable Carrie Fisher — a true princess of the nerdy underdogs.

I live unabashedly as a Wars fan. I turned to it when I was bullied as a kid (partly for being a nerd, but whatever) and when I had the beginnings of panic attacks in my later years. I blasted it in Kristina’s car as we looked out across a field in my old hometown. This was in the days of my waning hearing — I cried as I realized I could wake up the next day and be unable to hear the song at all.

I avoided this song for weeks because it sounded awful the couple times I played it since getting the cochlear implants. My brain has never been tormented by more horrendous ‘music.’ But I had my implants tuned today by an audiologist and got some new processors. Plus, the audiologist did some tests and said I’m doing “better than average” with my hearing compared to others at the same stage as me with their implants. So, I figured it was time to revisit Leia once again.

The song was maybe two notes off but it was glorious. The first day I arrived in San Francisco, deaf and on oxygen, I gazed at the setting sun and thought, “Everything will be just fine.” I looked out at the setting sun of San Francisco today as Princess Leia’s Theme played and thought, “It’s no Cloud City, but everything is fine.”

giphy

I spent four days in a row hanging with new friends from church, six days writing my memoir (14,000 words in), nine months of excellent health, two months of hearing, and I’m about to enter two months of holidays. I can listen to Christmas music this time! And, of course, a new Star Wars film is on the horizon. Life isn’t too shabby.

The grief I spoke of in the past few posts is now a blemish in life where it once was a vortex. My anxiety is also dulling and I’ve been keeping myself busy enough to distract from feelings of trauma. Things aren’t perfect and the mental problems could certainly gain powerful again. But I’m getting through.

Carrie Fisher was an advocate for taking care of your mental health while acknowledging its presence and power. Listening to Princess Leia’s Theme as I write this, I’d like to think she’d be proud of me for getting through and being open with you all about it.

“I am mentally ill. I can say that. I am not ashamed of that. I survived that, I’m still surviving it, but bring it on.” – Carrie Fisher, 2000

“We have been given a challenging illness, and there is no other option than to meet those challenges. Think of it as an opportunity to be heroic — not ‘I survived living in Mosul during an attack’ heroic, but an emotional survival. An opportunity to be a good example to others who might share our disorder.” – Carrie Fisher, 2016

23031592_555002194835735_8794464212676984806_nPS: I got my feeding tube removed after seven years! Now it looks like a second belly button. Annnd the median life expectancy for those with cystic fibrosis got raised to 47 (up from 41)! This is on top of there being more adults with CF now than children. These are ‘just’ statistics and it isn’t as easy as “all kids with CF will live to 47 — heck, it’s not even an average, but a median. But any progress should be celebrated.

It’s time we retire the old labeling of CF as a “childhood disease.” CF life expectancy doesn’t directly affect me since I got a transplant, but I’m still excited for my little cysters and fibros! I pray they experience a much different life of CF than I did.

 

The Vomiting Perspective

If I had to list my top three skills, it would be Star Wars debating, writing, and vomiting.

I’m a darn good vomiter. Nah, my head is stuck in the past. I’m not really good at it anymore.

But there were many years where I would vomit an average of four times every single day. Between the nauseating effects of medication, my lungs and stomach literally overflowing with thick mucus, and a vicious cough that gagged me… well, let’s just say CF isn’t ‘just’ a lung disease. It’s also a vomit disease (among many other things).

If you haven’t gotten the hint yet, this post doesn’t skirt around the nastiness of CF.

Anyway, I’d usually throw up at 7:30 a.m. while doing my morning treatments before school, then once during school or work after lunch time, then at 9 p.m. during my evening treatments, then 3 a.m. during my tube feedings. Most people would stay home if they vomited just once, but with CF you just kinda haveta accept that’s life and you still need to compete with all the “healthy people.” So I learned locations of public restrooms, I kept napkins and a toothbrush to clean up, I memorized which foods taste particularly nasty the second time, and the perfect angle to position my head and neck to avoid the vomit entering my lungs. And I got used to it. I could vomit and be back at taking my exams in a jiffy.

Now I’m gonna sidetrack so you understand why I’m revealing my vomit habits.

My feeding tube had a balloon that kept it secure in the stomach/intestine (so it doesn’t move around or fall out). About eleven days ago, the tube’s balloon burst. 14 inches of rubber was freely dangling about in my stomach while I scrambled to schedule an appointment to have it removed (frustratingly, I had to wait about nine days to get an appointment). I was in agonizing pain at times and having other stomach troubles. I even got so dehydrated I almost passed out in the middle of San Francisco! Thankfully, I got the tube removed an hour later (and it’s gone for good — after seven years of depending on it!).

Because of these troubles, I vomited. And I was not good at it. I moaned and yelled for my parents in the middle of the night. I don’t know what they could have done — I guess I just wanted someone to recognize my misery and pity me a bit. I’m a jerk when it’s 3 a.m. It just hurt so badly in my throat and nose. And ugh, so disgusting. Even after a few mouthwash rinses, I felt contaminated. How did I do this multiple times a day for years?

Today, after most symptoms cleared (and I lost six pounds), I hiked up some stairs to a summit in the Santa Cruz Mountains. The gorgeous views from those mountains always get me thinkin’.

The torturous vomiting was a daily, common reality during my CF days. It’s been about eight months since I’ve been that nauseous, so I guess I’ve just been spoiled since then. All around the world, there are others with CF and other conditions still living that reality.

I used to feel so frustrated when people would complain about their colds or flu when I was dealing with so many infections. It wasn’t until recent years that I realized that wasn’t fair of me — that we all have our perspectives. For someone who’s barely experienced sickness, ‘small’ germs will have an immense effect. For someone who’s battled huge diseases or cancer, a cold might seem ‘easy’ in comparison. That’s how built-up tolerance works.

I always thought nausea and vomiting was terrible, yes, but it was a normal occurrence for me. Once I’d gone several months without it happening, it was awful. I just wasn’t used to that kind of pain again. I thought, “Oh. So this is why healthy people hate vomiting so much.” It fuels my belief that we shouldn’t look down on others for those having suffering on different levels than us because of unshared life experiences.

Things like this humble me and make me realize how blessed I am to have put many aspects of CF behind me. And it makes me want to work even harder to help other people with CF. 

“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” – Romans 5:3-5