Tag: transplant

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.)

Freeing Myself from the Slavery of False Guilt

In 2012, my psychologist told me I suffer from an overactive conscience. It’s been spiritually crippling, but I’m ready to fight it.

“I was at an advanced showing for Monsters U and this girl, just the kindest girl, was behind my group in line. She had Down syndrome, I think. I asked her if she was excited and she told me she loved Monsters, Inc. This was the first time her parents let her go to an event on her own. I went into the movie, had a good time, then came out to find her standing by the curb at the parking lot. I asked how she liked the movie and she said she never saw it. That the line had cut off right after me — first come, first serve for the tickets. I had no idea. I hadn’t checked behind me when walking into the theater. She didn’t know how to contact her parents. She’d stood at the curb for two hours waiting for them to pick her up.”

It’s 2012, my freshman year of college in Seattle. My psychologist, a wizened man in his 80s (and wise as a wizard), leans his nearly-weightless weight onto a leather armrest that’s as creased as the creases between his eyebrows. He’s a forehead-creaser when he thinks hard. I like that about him.

“And you feel guilty. How guilty?”

“I barely slept the past couple nights and had three panic attacks. I can’t stop thinking about it. If I just turned around, I would have known she hadn’t gotten in. I would have given my ticket.”

“Panic about the past rather than apprehension for the future?”

“It feels like panic attacks. I just think about her face and cry.”

He leans forward, hands me a tissue, and pokes me in the knee. Stares into my face until he catches my eye.

“You can’t be mad at yourself for not turning your head. What other thoughts do you have during these attacks?”

“I think about her parents’ sadness when they realize their child’s first adventure was a failure. I think about kids from special ed in high school being bullied. I think about me not being their friend and helping them. I think about their parents’ sadness.”

“So the thought leads to a thought leads to a thought? And all guilt?”

“Yeah.” I blow my nose. Nothing gets cystic fibrosis sinuses running like salty tears do. The whole floral-patterned box of tissues is pressed into my hands.

“Guilt for things out of your control.”

“Maybe.”

I left the office with the words “overactive conscience” floating about in my conscience. More often called “false guilt,” it’s the idea that a person overthinks situations and places blame on themselves for things outside of their control. It’s commonly depicted in TV and movies as being tied in with post-traumatic stress disorder — survivor’s guilt.

False guilt is a cackling hyena, whispering discontent in my ear and shredding little pieces of my soul, bit by bit. My psychologist theorized it is the rotting root of my anxiety and panic disorders. 

It can be about small things: guilt for doing my job as an editor — criticizing people’s writing, though I know it will only grow their skills. For having to flake on plans with friends for medical emergencies.

It can be about big things: guilt that I (no, my disease, not me) forced my parents to drop their beloved jobs and move away from paradise. Guilt that I am living healthily while others with cystic fibrosis are still suffering. That every happy post I make is spitting on them. Guilt that I got new lungs while others on the waiting list died. Guilt for carrying the lungs of a dead man. (This is the part where I remind you that mental illness is not rational.)

Guilt that injects my sleep with nightmares. Guilt that makes my heart hammer so hard against my ribs that I hear it, even without my implants. Guilt that makes me question my identity, makes me question my purpose, makes me question my questions. Guilt that makes low blows to my joy.

Note: Amend all guilt to “false guilt.”

I deceived myself into thinking the guilt I had was a blessing, that it was used to force me to constantly try bettering myself. But there’s a difference between human guilt that is false and spiritual conviction. (There’s spiritual conviction that is God nudging you towards doing certain things. And there’s spiritual conviction that makes you confront your sins/misdeeds. The latter is what I’m writing about.)

Human guilt can be corrupted and passed off as humility, when it’s actually self-serving (it leads us to pursue what ‘makes us feel better’). False guilt is a form of that corruption. Spiritual conviction comes from God and ideally leads to remorse and action to seek forgiveness. When forgiven, the sin dies. When the sin dies, we live.

“Therefore, brothers and sisters, we have an obligation — but it is not to the flesh, to live according to it. For if you live according to the flesh, you will die; but if by the Spirit you put to death the misdeeds of the body, you will live.” – Romans 8:12-13

With these thoughts, I created a simple rubric for my guilt:

  1. Did I sin? (Did I disobey God?)
  2. Is this guilt keeping me from living as God wants me to?

If the answer is “yes” to either of these, there’s a problem. If it’s a “yes” to Question 1, I’ve sinned and should focus on remorse and forgiveness (which often requires action, not just words). This would also mean Question 2 is an automatic “yes,” until I’ve received forgiveness from God.

If Question 2 is a “yes,” and Question 1 is “no,” the guilt is false and is negatively affecting my heart. It should be dealt with before it festers and corrupts my mind by producing anxiety.

Check this out:

“For freedom Christ has set us free; stand firm therefore, and do not submit again to a yoke of slavery.” – Galatians 5:1

I view false guilt as a slavery. When I allow it to control my emotions and it is not from God, it is an idol and a master.

For my specific case — the false guilt produced by my transplant — I am learning to focus on God’s Will. If I truly believe it was His Plan for me to get a transplant, should I feel guilty for getting it? For taking joy in the fulfillment of a promise?If I didn’t sin by taking this transplant, why should I feel guilty? Would he have comforted me through this process in times of prayer if it wasn’t the process I was planned to undertake? 

“When anxiety was great within me, your consolation brought me joy.” – Psalm 94:19

Being transparent, I still have these feelings of false guilt even as I write this. I allow my anxieties to produce inaction when God is telling me, “Go.” But I am fighting back against this paralysis of spirit. God has given me new chances at life and I should be joyful.

“God has delivered me from going down to the pit,
   and I shall live to enjoy the light of life.’

‘God does all these things to a person—
   twice, even three times—
to turn them back from the pit,
that the light of life may shine on them.’”

– Job 33:28-30

Becoming Deaf.

A bit of background on how I lost my hearing.

You know those toy microphones? The ones that make your voice sound kinda echo-y and twing-y? That’s how Kristina’s voice sounded the day my hearing began to change, in March 2016.

83611672c6d9bd9104dabf99481eb6a3
Ironic that microphones are supposed to amplify sound. Instead, this marked the erasure of my hearing.

Within a few days, all female voices and most music sounded that way. One day, I woke up from my phone alarm going off. But it was the vibration that woke me. I couldn’t hear the sound at all, even when I pressed the speaker to my ear. I walked to class that morning and an ambulance sped past with sirens on. No sound, only pain in my eardrum. I could hear low pitches, but they were a bit muted, like I was listening to them underwater. I turned around and went back to my dorm to research what could be causing the problem. I didn’t think my hearing would be gone for good. I was annoyed, but relatively calm.

I actually lost the hearing in my right ear in 2010 from an antibiotic I was on. I had gone to school and realized I couldn’t understand what people were saying. Plugged my left ear with my finger and it was totally silent. Plugged my right ear and I could hear through the left. It was a frightening day, and one I remember every detail of because it was so life-altering. I adjusted in time though, and most people didn’t even know I was half-deaf. I protected my hearing extra carefully because of that though, never turning my music too high and blocking my left ear around loud sounds. I was afraid of losing the rest of my hearing, but at the same time, I didn’t really think it would happen. I guess that’s why I didn’t freak out too badly when my left ear started getting weird. The “universe” didn’t hate me that badly, right?

So, six years later, I was in the audiologist office and feeling pretty sure I just had water stuck in my ear or something despite not hearing well for about a month by then. I was just hoping the appointment would pass quickly – that they would drain the water out – so I could get back to the newsroom for a meeting I had. I didn’t make it to the meeting. Instead, I was told my hearing wasn’t going to return and left to sit in a hall with Kristina for about an hour to process that sentence. How do you process that? I’m not sure. I expected my family and Kristina to process it better than me. I demanded that they act more sad and afraid than they were, to stop telling me it would be okay. I demanded that they feel strongly and negatively, despite me feeling numb.

The doctors had put me on steroids about a week earlier, hoping that could restore my hearing if the loss was related to inflammation in the ear. Steroids do indeed give you “roid rage,” which took away the numb feeling soon enough. I became furious. When I got back to my dorm that night, I screamed, “THIS IS SO UNFAIR! WHY ARE YOU DOING THIS TO ME?” I knocked my shins against my coffee table and threw around some papers and plastic bottles. I’m not usually one for whining about the universe being unfair, but I was in that moment. I didn’t know how to process the idea of a new disability when I worked so hard already to succeed in life, in spite of my lung disease and mental health issues. By now, my lungs were getting steadily worse along with my anxiety and depression. The only things that made me happy in those days were my work as a journalist and editor, and my relationships. Now I couldn’t interview, I couldn’t be an effective leader, and I could hardly communicate with my friends or Kristina. I didn’t even have music to turn to for comfort. It was the perfect recipe to ruin me. So many tears were shed and I was so broken.

(This is the part where I applaud Kristina for being the perfect angel she is: sticking by my side and keeping me in the fight. If you see her, give her a hug, because she’s been through a war she could have left at any moment – I even told her she could. She never did.)

I still had some residual hearing back then, but I could only hear the lowest of sounds. Once my lungs got really sick, the doctors had to put me back on that antibiotic from 2010, which slowly stole the rest of my hearing over a three-month period. It seemed like every day there would be one less sound I would hear. I began to cherish the small sounds I could hear (cars engines, bass, thunder), while having constant anxiety that they could no longer exist to me the next day. They’re all gone now — I live today completely deaf, outside of tinnitus (ringing in the ears).

It’s still a mystery why my left ear first began to lose its hearing, although my doctors have had a few theories. We didn’t really see the point in pursuing answers.

I’m set to get cochlear implants in a surgery on August 31st. With implants, I could hear again! Others try different methods to restore their hearing. If you’re interested in that, I suggest checking out the blog My Hearing Loss Story, a fascinating read!

This is a three-part blog series about deafness. Consider this post the boring context-setting history of how I came to be in this position. In a couple days, I will post a blog about what it’s like to be deaf. It’s not all bad and there are a lot of misconceptions about what it’s like to not hear. A couple days later, I have a post of tips on how to interact with deaf people. Hope you tune in for both!

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.

We Made It! We’re Making It!

This blog won’t be so grand, ’cause I’m typing it hurriedly on my phone before embarking on another day of great adventure! Please excuse the rambling, disorganized nature of this post. But I figured the blog needing updating in light of all that has happened since my last post.

Got to San Francisco safely after riding in a dope jet that’s “like a G6.” I got to fly in this private jet because I needed huge amounts of oxygen to make sure my lungs wouldn’t implode or something at the high altitudes.

There are two big “aspects” of my trip I’ll update ya’ on, so you can just skip to whatever you’re interested in: the hospital-side of things and the vacation-side of things.

The Hospital-Side:

img_1580
So far, so good. Had three long days of appointments in which we met with transplant docs, CF docs, and an infectious disease doc. Long story short, they THINK I am eligible for the transplant list. But it’s not certain yet. We still have (painful) tests to undergo. There are some barriers I will have to overcome in terms of current infections I’m battling, but fingers are crossed and hearts are optimistic.

If I am put on the list, it could take an average of 3-6 months to get the transplant. If I get accepted on the list, I’ll write a more detailed post explaining the process.

Health-wise, I feel so amazing. The humidity in Hawaii really bogged me down, plus I’m trying out some new treatments. Two big changes: appetite and energy. I haven’t had a good appetite without the help of steroid meds for months, but I’m finally eating some now! Not sure if it’s because I’m surrounded by so much great food, or if it’s because of generally better health.

My energy boost has been astounding. In Hawaii, I only went outside the house for 4-5 hours, and spent most of that time sitting down in the theaters or at coffee shops. According to my FitBit, I was only averaging 600 steps a day. Even just talking to people made me tired, and I would need gasps of oxygen between bites of what little food I ate. Now, I’m energetic, on less oxygen, and out of the hotel nearly all day. Just yesterday, I hit 6,200 steps! So I guess you could say I’m doing 10x better now? Let’s hope this health climb continues.

The Vacation-Side:

 

Kristina is here with me for the first week (she leaves tomorrow :c ), so we are trying to play tourist. It also helps to keep my mind off the scary transplant stuff. We visited the Walt Disney Museum, the Aquarium of the Bay, explored Haight-Ashbury a little bit, roamed Fisherman’s Wharf and Golden Gate Park, and today we will be seeing what Mission District has to offer.

Of course, we also ate a lot of yummy food, from Chick-Fil-A to loads of chowder to Cuban food. I’m gonna miss the local food scene in Hawaii, but the Bay doesn’t seem half-bad when it comes to the taste buds.

Actually, the Bay isn’t half-bad at all. I think I will love living around here. I noticed there’s loads of disabilities accessibility, nerds to blend in with, diverse culture, and beautiful, comfortable climate (I love fog). We will probably be living in a city an hour or so outside of San Francisco (Gilroy or Sunnyvale), but it’s still cool to have nearby.

I miss everyone! But don’t worry about me. I’m doing better than fine.

P.S. I’ll getcha a better blog post ASAP!