With Every Breath

With Every Breath

By Joanne E Galliher

My Frisky Trifecta is living half-glass full. Bold, not blasé. Curious, not complacent. That saved my life and makes me 70 going on 30.

At 62, an unidentifiable virus devoured 75% of my lungs in six hours. It was like an unconscionable piranha. Leaving me to struggle and miraculously survive a non-negotiable prognosis. “There’s only a 20% chance you’ll be alive in a year.” I hung in 1,187 days.

My unformidable team. My Frisky Trifecta and Filipino, Cherokee and Irish ancestors.

What a long journey: 1,187 days dying, 512 days on the Double Lung Transplant Waiting List and 150 days of recovery and rehabilitation. It had more peaks and valleys than the Himalayas.

It all started 2AM, November 13, 2013, I jolt awake.

Back it up… I had done my usual 80-minute sunrise jogging the day before. My legs felt as fleet footed as Forrest Gump. I felt as invincible as Wonder Woman.

It’s like a python, as thick as my thigh, strangles my chest and throat.

My nostrils open and close as if squished straws to gapping canyons.

I’m gasping like a revving vacuum cleaner slamming into a wall.

My cats startle awake. Frazzle-fluffed tails. Airplane ears. Their meowing could crack crystal.

I'm bobbing like an oil rig on steroids.

I hear Dad, Mom and my sister from Heaven.

“Be determined!”

“Persevere!”

“Focus!”

I dump myself on the floor. Crawl. Grab my phone.

Sid, my neighbor answers straight away.

He hears my horrendous gasping.

“Get outside!” He screams.

Hunched, all I see are his snowboard bare feet.

I could kiss them!

He bundles me in his arms; like we’re Ann Darrow and King Kong.

The paramedics load me into the ambulance.

“I can’t be DOA!”

The driver pats my trembling hand.

I squeeze my eyes shut and go to my Happy Place. Back, when I was 59 and a cowgirl (jillaroo) on a 66,000-acre cattle station in Outback, Australia.

…

Six ER medicos work on me like a finely tuned pit crew.

After four hours of whooshed around for every test imaginable…

A nurse in full PPE scurries in. She whips off my nasal cannula. “You’re carbon dioxide retentive. I’ll be back in 20 to put you back on oxygen.”

It's like the Isolation Room walls croon, “You’re as lonely as a bone without a dog.” 

“Good morning, Ms. Galliher,” says a doctor as sedating as Mr. Rogers.

“It’s Miss Galliher!” I snap.

I don’t want a doctor who’s as weak as water!

Bam! I’m like a deer in headlights. Hearing but not listening.

“Unknown pneumonia killed 75% of your lungs.”

“Terminal COPD. Chronic Obstructive Pulmonary Disease.”

“Hypoxia or breathlessness 24/7.”

“Might be able to walk 15 yards.”

Once he leaves, I compose Joey’s Diehard Plan:

I can’t stop death. But I’ll slow it down. Long enough to play, at least once, with my grandson. And keep revising my trilogy novel.

Screw you COPD, Prognosis, and Death!

And PTSD? I don’t have time for your nonsense!

Let the race begin! I’ll beat you three!

…

Day 8. Whoo Hoo! I’ll be discharged today. But first a few appointments.

I’ll scream if the social worker starts another sentence with “Because you can’t…” I refuse getting an in-home hospital bed and a wheelie-walker. But the shower seat sounds great.

The pharmacist can only give me three prescriptions. A preventer puffer and a reliever puffer. I refuse the liquid morphine.

I’m glad Sid and I don’t talk as he drives me home. I’m too busy being breathless.

…

I look at my beautiful brand-new queen bed. All I see is that ‘python.’

Day 11. Like a gunslinger, I cautiously approach my stall shower. Will I chicken out?

The shower’s steam gives me a hellish hypoxic attack.

From now on I so like marine showers. I do one body part at a time. Soap it. Step outside the shower. Do pursed lip breathing. Step back in and rinse

It takes me at least 40 minutes to put on T-shirt and sweatpants.

Just baggy clothes, from now on.

I jump off the scale like it’s on fire.

I haven’t weighed 75 lbs since I was 12! I’ve lost 35 lbs in eight days!

Even opening a flip-ring-top can of soup is impossible. I’m too feeble and breathless. Cornflakes, banana and milk will have to do.

I gaze up at My Happy Wall. It’s a massive collage of photos.

Me, trimming the sails on the 40-foot ‘Tsunami.’ What a great four-day race.

Now, everything in my life’s a tsunami. Breathing. Showering. Dressing. Even eating. Hard to chew while non-stop gasping.

I smile at the photo of Dad and Grandpa. WWII just ended in their Philippines. Dad survived his unpaid stint as a Guerrilla Warfare soldier, 13 to 17. Cherokee/Irish grandpa survived a Japanese internment camp. With just one leg, he roamed the world until he died.

That gees-me-up.

“Poo to your 15 yards, doctor! With every breath, I’ll live longer.”

Day 15. What’s with ‘2AM?’ I’m gasping like a dozen revving vacuum cleaners.

I purse-lip breathe enough to call the ambulance dispatcher

Only in the hospital for three days. Just for nebulizing and intermittent low flow oxygen.

The social worker arranges for an in-home hospital bed and wheelie-walker. And for an in-home assistant, for a couple of hours a week.

…

Day 365. I’m still alive!

I’ve been revising my trilogy novel in 10-minute blocks alternated with 20-minute lie downs.

I really enjoy my daughters’ video calls. I get to watch my one-year-old grandson play.

I still don’t use the wheelie-walker in public places. My silly pride.

I ‘fake-walk’ by lengthening my shuffling. I tack from one shop window to the next. One bench to the next. It’s embarrassing when well-meaning people offer to phone for an ambulance.

Until this COPD, I never felt embarrassed. Not even at 10, when my stream of diarrhea cleared a pool full of kids. *Never gobble-down two dozen chocolate mint cookies in 30 minutes.

Day 730. Get out the confetti! I’ve lived twice that prognosis!

Hypoxic attacks now hit me every five minutes. Gobbling almost all my daily 5,000 calories. No wonder I now weigh 60 lbs and am 50 lbs underweight.

I only leave my in-home hospital bed to eat or use the toilet. My only socializing is when my in-home assistant helps me one-hour, twice weekly. Before this COPD, I never turned on my TV during the day. Now TV and my two cats are my only entertainment.

I better play with my two-year-old grandson before it’s too late.

Day 763. I survive the 3-hour flight. I spend 10 days, including Christmas, with my 3-year-old grandson, my daughter, and her husband.

My nose memorizes their wonderful scents.

The hypoxic attacks let me hold my grandson for a few seconds. I memorize the sweet feeling of that.

I gaze into my 37-year-old daughter’s baby-blue eyes.

Oh, no. Her lips quiver like when she was a toddler. Seeing me frail is a hurt I can’t just kiss and make better.

Day 764. I find a storybook with only 3-word phrases.

I can only read one word before a long hypoxic attack hits me.

My toddler grandson tenderly smiles and pats my trembling hand.

I can go to Heaven knowing he’ll be a true humanitarian.

Finally, after 764 days of dying, the hypoxic attacks take pity on me. I tick off Wish #1! I make bubbles with my grandson for five whole wonderful minutes!

…

Day 773. There’s only one hour left on my 3-hour flight home when a hypoxic attack clobbers me. I’m doubly glad to wear an oxygen mask. It hides my tears from the passengers’ panicked and pity-filled stares.

Back in the hospital.

Then, like a ray of sunshine…

A doctor, who’s a dead ringer for Paul Newman, stands inches from my face.

An insatiable smirk fills my lips. I thought dying took that from me.

“120/70. Excellent.”

“You’re 64 but look 46. But you’re dying. What’s your secret?”

I slam shut my gapping mouth. “I’m Mestizo. Half Filipino. We’re pickled…”

“Pickled? Well-preserved! I love that!”

He leans right in.

“I can see Cherokee in your eyes and face.”

“I’m only a bit.”

He throws his head back, laughing. “No wonder you’ve outlived that prognosis. Lots of patience and perseverance.”

“Come on! Walk with me! I’ll tell you how to get a double lung transplant. You’ve got to have one.”

Look at me! I’m march-shuffling!

…

Once alone, I go online.

I disregard how only 65% of double lung recipients are still alive five years after their transplant.

Then, I read about an 80-year-old Irish lady. She has been 100% healthy since her double lung transplant 25 years ago.

Day 784. I’m in the Double Lung Transplant Team Director’s office.

Not once has he glanced up from his laptop since I sat down 10 minutes ago.

And all the way from Heaven---

“Head up. Shoulders back,” orders Mom.

“Be determined,” orders Dad.

“Whatever you do. Don’t gasp,” says my sister.

That makes me gasp like a dozen vacuum cleaners.

Now he’s forced to look at me. “Tsk, tsk, tsk. You’ve cut this too close.”

I hold up my hand like a stop sign. I quickly write on my notebook: “But ‘cutting it close’ is a crucial criterion to get on the Double Lung Transplant List. My life expectancy has declined from 20% to 18%.”

He talks to the wall, not at me. “Why have you left this until now? Too scared? It takes lots of courage to get through a double lung transplant.”

He scans my long hair. “It’s not as simple as getting a haircut.”

“And look at you!” He thrashes his finger at me like a sword. “Nothing but a bag of bones! You’ve given up.”

I try to talk.

He fiercely shakes his finger at me. “You’ll have your say. After I finish.”

I hear Mom, “You know this is an Inquisition. You’ve got to speak up.”

Like some Gestapo, he says, “You’ve mostly been on your own for 38 years. Your closest family’s a 3 hours’ flight away. PTSD has been your problem for decades.”

He bangs his laptop shut like a courtroom gavel. “I don’t think you meet the inner toughness nor the support system criterions.”

Up goes my stop sign hand. But the hypoxia attack is extremely strong.

I resort to writing. “My daughter’s a university-educated, self-sufficient, self-confident, professional woman, wife and mother. She’s like what I’ve been all my life; except I became a single mom when she was two! I’ve handled migrating her and I to a new country. Don’t let my dying fool you!”

Now, he sounds like a Gestapo and drill sergeant. “We can’t willy-nilly give away double lung transplants!”

“Last year, there were 435 donors. We did 375 lung transplants. Half were single lung and half were double lungs.”

I croak. “And I KNOW THAT 160 donated lungs weren’t viable; or not perfect matches.”

I write: “See? My PTSD doesn’t quell my thinking.”

With a slight grin, he signs a mountain of referrals.

“Your only health issue can be your Terminal COPD. These tests must confirm that. There’s a referral to the Respiratory Gym. Gain 30 lbs or you won’t be placed on the Waiting List.”

I could hug him!

…

Day 785. It’s the very next day. I zip around to all the appointments.

The zillion tests check for everything: cancer, common viruses, HIV, Shingles and Chicken Pox, breast and other female cancers. There’s a Doppler Ultrasound for my heart. X-rays and CT scans to measure the space where two new lungs will go. Vials of my blood. One determines my Blood Type and antigens. I’m Type O. My donor must be Type O. Other organ recipients, with Type AB or Type A can have a donor with all the Blood Types.

Day 795. The moment I wheelie-walker shuffle into the Respiratory Gym, I see I’m the most gimped. But their smiles tell me we’re all in the same coffin.

I imagine I’m 15. I made my own 4.30 to 7.30AM workout. My barbell was made with two cement-filled coffee cans and a broom stick. Three months later, I got my first Blue Ribbon for an 800-yard freestyle race.

Day 865. After just eight gym sessions, I become Quick Draw Mc Graw using my puffer and pursed lip breathing.

I wheelie-walker march into the Double Lung Transplant Team meeting. Everyone’s there. Director, double lung transplant surgeon, physiotherapist, social worker, and transplant coordinator.

I just passed today’s Six-Minute Walk Test. Walking 164 yards in six minutes. But that’s with oxygen and pushing my wheelie walker.

It’s unanimous. Today, June 16, 2016, I’m on the Double Lung Transplant Waiting List!

Every three months I’ve got to walk at least 164 yards on the Six-Minute Walk Test. Every month’s blood test can’t show other illnesses.

I’ve got to avoid bacteria. Can’t get near cigarettes, perfumes, strong disinfectants, petrol fumes, room fresheners, bug sprays, varnish, paint fumes, BBQ smoke, fireplace/campfire smoke, crowds. Can’t soak dirty pots and dishes. Can’t eat: any fruit or vegetable until dish soap washed, mushrooms or shelled seafood, runny-yoked friend eggs, meats sold in showcased butcher and deli sections. And can’t eat any Bain Marie foods.

I jet out my chin, totally confident when the Director says he’ll email the whole Can’t List.

Day 975. I haven’t skipped a single day’s 5,000 calories of nutritious food. That’s tough because hypoxic attacks disrupt my chewing.

It’s as quiet as a funeral home when I shuffle into the gym.

My gym buddy didn’t get over her cold.

How could she—a 52-year-old, cherished wife, mother of four adult daughters, with 12 grandchildren; and a great grandson on the way… Now be in Heaven?

I head to the mall to buy a sympathy card. As I wheelie-walker shuffle, I home-in-on every healthy person’s face. My dull eyes, pale face, sunken cheeks, and scarecrow body… All a sharp contrast to their sparkling eyes, rosy-cheeks, fit bodies and speedy walk. They’re still in life’s exclusive Healthy Peoples’ Club.

My dumb PTSD rears its head. It’s like Groundhog Day. On the Waiting List 210 days, to-date.

Day 1,180. Today’s Transplant Team meeting is a total downer. No one’s smiling. They know I’ve been in the hospital at least 10 times these last 40 days.

Even the Director’s voice cracks. “Fill this prescription. Stop torturing yourself with 24/7 gasping.”

I squeeze out, “No. It’s morphine.”

As I wheelie-walker shuffle out, I feel I’ve left my Wake.

…

It’s Day 1,187 of my apocalypse. It’s that unforgettable hour, 2AM, but it is April 9, 2017.

After 10 months and 3 days or 333 days on the Double Lung Transplant Waiting List, I get my Phone Call. I was born on a Sunday! I’m about to be reborn on a Sunday!

Once at The Alfred Hospital, I feel like the Birthday Girl because all the medicos smile with excitement.

I’m whooshed around, getting all the pre-transplant blood tests, X-rays, etc.

It’s dead quiet except for the soothing sound of a breeze whistling through the slightly open window.

From out of nowhere, crushing grief hits me. I tenderly pat my chest.

“Oh, my tiny bit of lung, you’ve more than had my back. YOU hung-in and hung-on by a thread, all these painful 1,187 days. Thank you for never forsaking me. Never doubt you and my donor are my heroes.”

I hear my dad. “You’ll become an eagle. When eagles turn about 40, they fly to a mountain peak. Pluck out their old, matted feathers. Smash their beak and talons. Don’t eat for five months. Grow new feathers, beak, and talons. They’re reborn.”

“Great news. It’s a match.” Says the Lung Transplant Surgeon.

He leans into my face. “Joey, we’re cutting this a bit too close.”

“I know. The airplane was an hour delayed.”

“You’re very frail. If you had just gone into palliative care a few months ago…”

I say, “I accept everything happens when it should. And Doctor, we’ve got this.”

…

It’s April 12, 2017. I’m being roused after three days in induced coma.

Boy, am I relieved! Everywhere I’ve ‘looked,’ there’s been this spooky ethereal blue. Like the sky in Disneyland’s Blue Bayou ride. All three days, I’ve feared, have I been abducted by aliens?

The transplant social worker chuckles with excitement. “Joey. Time to take your first full breath, after 3-1/2 years.”

I belt-out singing, “I’m in Love with a Big Blue Frog.” My daughter’s favorite song since she was a toddler.

We’re laughing like crazy.

Up stroll three steel-faced doctors.

My oxygen saturation was only 80%. It must be 87%.

I get a tracheotomy. I’m back in ICU. Re-hooked on a ventilator. Then, a bit of fiasco. Extending the 12 weeks rehab into 35 weeks.

1. Naso-gastric fed for five weeks.

2. Blood pressure dangerously plummets because of dehydration. IV fluids 24/7 for seven days. Incontinent around the clock.

3. Reactions to the anti-rejection med Tacrolimus. Severe trembling and mild stuttering for 12 weeks. From shoulders to heels, feeling like I’m on fire, for seven nights.

4. Reaction to essential anti-rejection meds Mycophenolate and Valganciclovir. Vomiting and diarrhea after every meal, for 12 weeks.

5. Re-hooked to ventilator eight weeks instead of three. I can only talk using a Speech Valve when I’m allowed off ventilator a little each day.

Today, I’m 70. It has been four years and eight months since my donor and her family blessed me with a Second Chance at Life. Together and every day, in spirit, we—jog 80 minutes, cycle 30 minutes, do 30-minutes of leg exercises and killer Pilates. We’ve done five half-marathon runs. We will finish Tasmania’s challenging Point to Pinnacle Half-Marathon Race November 2022. I’ve played in-person with my 8-year-old grandson. I’ve revised my trilogy novel 12 times. My beautiful lungs are 125%.

Never The End…

Forever A New Beginning