Category: Cystic Fibrosis/Lung Transplant

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.

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.

26166387_10214755892275204_9089111339431623436_n.jpg

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.

tumblr_lr55rvrd9h1qc9jizo1_500
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.)

16729539_10211750663306358_3921749004560800372_n

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!

This slideshow requires JavaScript.

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!

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.

unnamed (2)

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.

unnamed

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.

unnamed (1)

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).

unnamed (3)

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

Some things are bad, but many things are good.

A cheery update on how things are going, to make up for the last dreary post.

Howdy again. My last post was rather dreary, so I owe you all an upper in the form of a life update.

How’s the heart?

First off, a big thank you to those who commented and messaged support on here and my Facebook. You confirmed I made the right choice in being open about my struggles. Things have gotten a hundred times worse for a reason I’ll keep to myself for now, but I have begun looking into therapy. There’s a Christian therapy group just a mile away from home, so maybe them if they accept my insurance. I will get through this.

“Where there is no guidance the people fall, But in abundance of counselors there is victory.” -Proverbs 11:14

How’s that hearing?

It’s better than I expected it to be! I’ve heard people say their implants started sounding natural after months of using them, but I think it all sounds natural already. Voices are sometimes too soft and some music is still a big miss, but those are things that will get better with more tuning up and practice. I’ve had one tuning (“mapping”) session so far and it helped a lot with making sounds more full-bodied. My audiologist told me to give her my report quietly because she didn’t want other implant users in the clinic to get jealous that I’m already loving music. That usually takes several months or never happens for many.

One big change since my last mapping is worship music sounds normal again. I’m probably annoying my neighbors with all my singing! But the singing really helps with the whole grief thing, so I ain’t gonna stop.

“My heart, O God, is steadfast, my heart is steadfast; I will sing and make music.” -Psalm 57:7

How’re the lungs?

“Beautiful,” “excellent,” and “perfect” are words my transplant doctor used during my Thursday transplant appointment. My lung function hasn’t changed, but that’s fine since they’re already as strong as a healthy person’s, statistically. No organ rejection! I also get to cut down on my steroid dose by half. I should be a lot less moody and get better sleep because of that.

My doc showed me my CT scans (really fancy x-rays) from 2015 and about three months ago. Seeing them next to each other was a jaw-dropper. My lungs in 2015 had these massive black holes — cavities. You could also see all the netted scarring and mucus plugs. It was appalling. And that was before my lungs started failing in 2016. I never posted them on my blog before, but I actually have pics of my old and new lungs. Click these words to visit a Flickr page with the pics. Don’t worry, it’s only pics of the organs in buckets. No surgery pictures!

“It’s Your breath in our lungs so we pour out our praise.” – All Sons & Daughters

How’re the kidneys and weight?

The kidneys are still in rough shape but they’re not getting worse. It turns out my blood testing lab may have been making my kidneys worse by measuring my medication levels incorrectly (which leads to me being overdosed by transplant meds that are very hard on the kidneys). Maybe there’s hope for my kidneys if we sort out the lab problem…

My weight has been pretty consistent! It’s been about 3.5 months since I did my feeding tube. Wow. I really doubted I would ever be able to keep on all my weight by just eating. Remember, those with cystic fibrosis need double the calories and fat needs of a normal person. It’s hard!

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?” -Matthew 6:25

What about fun?

Plenty of it! Been going on hikes with the parents, chillin’ with a friend who went to Mililani High (my old school), and going to church twice a week! Check out my slideshow below.

This slideshow requires JavaScript.

“So I commend the enjoyment of life, because there is nothing better for a person under the sun than to eat and drink and be glad. Then joy will accompany them in their toil all the days of the life God has given them under the sun.” -Ecclesiastes 8:15

Feeling normal is abnormal and I dig it

I was sitting and watching tv when I realized I hadn’t thought about breathing in hours. Maybe not even since yesterday.

I don’t know how much the average person thinks about breathing. It’s an action that’s taken focus for many years now.

Before I got home from my trip, I hadn’t weighed myself in two weeks. And I never once got anxious about my weight or obsessed over how much I was eating. I was just eating. And enjoying eating. It wasn’t a chore.

Before, I weighed myself three or four times a day, praying I’d spontaneously gain several pounds between each weighing session. I was logging my calories everyday and melting down if I fell short or couldn’t figure out the exact calorie count for a food. I loved the idea of food but hated needing to consume it out of obligation to my CF needs.

I finally stepped on the scale and I saw a number that was bigger than before the trip. I’ve been eating all day just because I want to.

I feel normal. Not normal for me. I’ve never felt normal until now. Rather, I feel like how I imagine feeling normal should feel.

During my two-week trip, I felt even better than normal. I felt adventurous.

Recap Time!

There was a sandstorm right after we landed in Phoenix. Then, I met with my first friend from high school and her husband. We explored a really rad old mining town.IMG_4697Later, I shot some guns in Flagstaff, Arizona for the heck of it.IMG_4778Then, I trekked through Antelope Canyon — magnificence. I did this with church group friends I left behind in Hawaii but who have stuck with me in the spirit of support.IMG_4924Then, we went to Horseshoe Bend — I stayed away from the edge because I fought too hard for this life to risk falling! SAMSUNG CAMERA PICTURESThen, we went to a fantastic collegiate ministry conference in Glorieta, New Mexico for a few days. I learned so many complex, eye-opening things about God. Big thanks to Kristina for transcribing.IMG_4996Then, I met with my first friend from Hawaii and ventured all around Santa Fe with him.IMG_5033Then, I saw my sister for the first time since transplant. Then, we met my cousin Tammy who was wonderful — and I forgot to take a picture with her!98F6D5D8-44FC-4FFB-94F0-7BB542D22EE7Then, we explored Denver. IMG_5348Then, I met with my first friend from Tennessee and shared childhood memories over the best ramen I’ve ever had.IMG_5082Then, I met Shelby’s boyfriend Greg, who turned out to be a really rad guy — I approve. 20767969_10213612758257568_2817002159544835128_nThen, Kristina left for Hawaii, which was sad, but I’m sure she’ll have a great semester. IMG_5054Then, we drove up into the awe-inspiring Rocky Mountains and I climbed stairs about 200 feet to reach 12,000-foot altitude. I hyperventilated up there (note the sign in the picture) while getting barraged by hail in intense wind. It was spectacular.IMG_5153Then, we explored Colorado Springs. Then, I came home.

Once back, my dad went in for surgery to fix his snapped collarbone (mountain biking crash). I’m not used to being the one in the surgery waiting room. And I’m definitely not used to my dad being on O2 (protocol) and me being hose-free! I can only poke fun at him because he’s doing totally fine.IMG_5386

I’m not exhausted at all. I wish the trip continued across America or even into other countries. I spent a lifetime on couches and at desks. I think I have a lot of catching up to do.

Next up: My best friend Josh is visiting from Hawaii for a week! Excited to play tour guide around the Bay.

A Better Cure

“My ears had heard of you, but now my eyes have seen you.” (Job 42:5)

If the cystic fibrosis community lived in one place, the streets would be filled with dancing. Patients and their families are jubilant at the news of early success in trials for multiple potentially life-saving drugs — almost-cures. Alongside thoughts of joy for my friends are thoughts of “what if.”

What if I had held out just a little longer on my old lungs? Would I have gotten an almost-cure?

It’s hard not to think these things.

A close friend told me that my year-long ordeal extinguished their faith in God. They couldn’t make sense of why I went through so much misery yet continue to praise God. Why cling to the one who could have intervened but supposedly didn’t?

I think of biblical Job in all his despair, being told to curse God and die. To give up. Job recognized God as his source of strength and it is because he clung to Him that he eventually was given an even better life than what he had before. Near the end of the Book of Job, he says to God, “My ears had heard of you, but now my eyes have seen you.” (Job 42:5) The true treasure wasn’t the earthly things God gave him, but the idea that he now knew Him. He had an experience that, while terrible, gave him an understanding of God beyond what writings and traditions had offered.

See, if I gave up on God because of my hardships, I really have no doubt that I wouldn’t be here today. It’s a theological myth that “God never gives you more than you can handle.” There are things we can only handle with His help. In the days before my ICU meltdown last summer, I’d nearly given up. The strength I’ve since drawn from prayer and seeing His plan for me unfold step-by-step — a million “coincidences” that stacked on each other and saved me — is inexplicable. And now, I see that God did intervene.

Maybe there’s a cure in the near future. But I saw those CT scans: cavities, literal holes in my lungs. Irreversible scarring. I saw photos of those lungs when they were removed from my body: ravaged, shredded. The damage was done and a cure would not have undone it. Even if the disease was halted, I might have lived longer, but I probably have still been so, so weak and sick. For the rest of my life. That’s no way to live.

Why did God allow the damage to happen in the first place despite my faith? Because I didn’t understand faith. We have this fairytale belief that we can live lazily and expect God to reward us, so long as we pray. No, God wants us to meet Him halfway. He wants us to work for the prayer. While my mom cried at night during her prayers for me, I was neglecting my treatments. God gave me so many chances, so many warnings. But I fell into my bad habits time and time again. I was responsible for my sickness, not God.*

God is responsible for the new life I’ve been given. I shed so many tears over cystic fibrosis. I still cry just as much, but the tears come from happiness. I have never been so happy, even despite my deafness (which hopefully will soon be fixed by cochlear implants). I was in so much pain with cystic fibrosis. More than I even realized. It wasn’t until I tasted what it’s like to have healthy lungs that I recognized how much I’d been missing out on. I told my mom the other day that even if I were to die tomorrow, the transplant was worth it. I was so tired. Now I’m living.

I used to tell everyone that I was 100% confident a cure for cystic fibrosis would come in my lifetime. Maybe a cure will come, it just won’t be for me. But I also feel that I received my own special cure. That while transplant is an illness of sorts, it has nothing on cystic fibrosis. My old English teacher, Mr. Schick, emailed me and asked if I “beat CF.” After chewing on that question for about a week, I feel like I can say, “Yes.” I didn’t just survive. I feel victorious.

I dove into this situation confident that I would have a spiritual transformation. I received physical transformation as well. God did save me. I’d heard of God, but now I’ve seen Him.

*Note: I am not saying every person is responsible for their own sickness. Just in my situation, yes, I claim responsibility. I knew the consequences of inaction in taking care of myself, yet I proceeded.

The Sugar Trick

Sugar would make life easier. If it didn’t threaten life.

Mom never had to force me to eat my veggies. Matter of fact, she had to (try to) force me to eat less of them. There’s nothing quite as refreshing as coming home from a stressful day of middle school and popping open a can of black-eyed peas or a fresh container of grape tomatoes, paired with a tall glass of chilled pineapple juice.

Visits to the dietician were unorthodox: “Ditch the veggies, keep the juice. It has calories. Don’t you want cake? Those vegetables are just wasting space in your tummy, space that could be filled with fattening foods.”

See, with cystic fibrosis, my pancreas doesn’t work too well so I don’t properly absorb nutrients and fat. Plus, I burned so many calories while fighting infections that I needed double the caloric requirements of a ‘normal’ person. The reality was docs weren’t trained back then to expect long-term treatment for CF. That being the nice way of saying CF is a childhood disease, which is a nice way of saying ya’ die young. So, “adult problems” like heart disease and diabetes and all that were beyond the horizon. Get the kids plump now so they can fight infections better. If sugar does the trick, it does the trick.

I was young and reverse psychology had its way with me. Desserts were chores when forced on me. I was the only kid at birthday parties who turned his nose at cake and went for the untouched veggie platter. But I eventually hit an age where the doctors started talking about feeding tubes. So, I tried to only eat veggies with butter melted on top and added in the occasional can of Ensure (fatty chemicals sprayed with cheap vanilla perfume). Not enough. In high school, I packed my pockets with Lil’ Debbies and Snickers. Almost always had a bottle of Mountain Dew in my bag, pillowed against an Uncrustable or two. I eventually ended up getting the feeding tube. But sugar enslaved me by then.

I thought I was consuming copious amounts of sugar to save my life. Turns out, I might very well have been killing myself. CF has come a long way since then. It isn’t a childhood disease anymore. Now we know that certain foods — looking at you, sugar — cause high levels of inflammation. And inflammation is just about the worst enemy CF-ravaged lungs could have.

I ended up in the hospital for 46 days straight last year. I got a big wakeup call when it came to diet: inflammation was squeezing my airways like a python and I was to begin treatment for diabetes. Most people know about Type I and Type II diabetes, but not many know there’s a third: cystic fibrosis-related diabetes (CFRD). It’s a delightful mix of the two types. Like I said before, the pancreas of a CF patient isn’t effective. When the docs took a CT scan of my pancreas, it looked like a tiny thread on the screen when it should have looked a bit like a fat, bumpy chili pepper. Your pancreas produces insulin. If you don’t produce insulin properly, ya’ get diabetes.

My hospital stay turned into a sugar detox. I figured if I avoided heavy carbs, I’d avoid the insulin needles too. And boy, was it hard. My veins pumped Mountain Dew and Gatorade. Before this time, I avoided drinking water like a cat with rabies. But I was able to slowly transition from drinks sweetened with stevia to pure water. I rejected the Lil’ Debbies and nibbled on cashews while researching healthier ways to gain weight. I was able to tweak my diet enough to only need 24-hour insulin shots instead of correctional insulin before/after eating. And I felt so much cleaner despite the other medical problems I was dealing with.

If you know me well, you know of my struggles with appetite. Between the nausea and general shifting in the stomach from antibiotics, the appetite-thieving side effects of other medications, and the onslaught of infections, eating was a hard thing to do. Like I said, I was nibbling on those cashews, not pouring them down my throat.

I’ll let you in on a shameful secret: I didn’t completely get rid of the sugar. Remember the feeding tube? Every night, I got 2,500 calories and over 100 grams of fat while sleeping in the form of these milkshake-type things, kinda like Ensure. And like Ensure and actual milkshakes, they were packed with high-fructose corn syrup (fancy talk for factory-processed sugar syrup). How else do you pack that many calories into a liter-and-a-half shake? “If sugar does the trick, it does the trick.”

Lung transplant came and with it came a boosted appetite. Steroids help me keep my immune system at bay so it doesn’t attack my new lungs. And steroids give me a heck of an appetite. I enjoy food so much now that my parents and girlfriend have to ask me to stop making growling noises while I eat. My diabetes also mysteriously disappeared, taking away the need for 24-hour insulin. I’ve weaned off the feeding tube and take everything by mouth. Despite steroids making me crave carbs, I try to stick to healthier fats that are conveniently refreshing on these sweltering 100+ degree days, things like cold avocados and coconut milk.

But my dear old friend, sugar, is smiling its sinister smile. One of my key medications causes high potassium levels. A couple months ago, my potassium got so high that the doctors feared it could give me fatal heart troubles. So, a low-level potassium diet was enacted. You know what has high potassium? Avocados and coconut milk. And potatoes, and most meats, and my feeding tube formula, and yada yada. You know what doesn’t have high potassium? A lot of those carb-y treats. I still have my 3,500-calorie diet. If I don’t hit my goal, I can lose up to two pounds in a single night. Before you say the oft-repeated joke — that you wish you had that problem — know I wouldn’t wish the malnourishment I’ve experienced on my worst enemy.

In recent days, I had some chocolate, some pie, some cake, a sip of soda. It’s just a little something here and there to keep my weight on. Now I’ve got anemia (lack of iron), which causes me to lose even more weight. So, I have to step it up a bit. Maybe a cup of soda instead of a sip, maybe a couple Nutty Buddy bars or a couple Pop-Tarts. And I find I’m not just doing it for the weight now. I’m getting shivers of pleasure down my spine as I chug that sweet, syrupy Baja Blast or munch into that delectable cheesecake.

I calculated my sugar intake yesterday and nearly had an anxiety attack. “It’s just sugar,” sure. But when I’m carrying lungs that were donated to me, that were given as a gift, I see it as being downright selfish of me to not work harder to protect my health. I don’t know the easy answer for weight gain when potassium, iron levels, and sugar intake need to be balanced. Perhaps there isn’t an easy answer. But I’m determined to not fall into my old habits again. Sugar does the trick, but I won’t let sugar trick me again.