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Joanne Galliher

WITH EVERY BREATH

 

With Every Breath  

…a tale of struggle, survival & CELEBRATION

*Inspired by a true story

As Lived by and Written by Joanne E Galliher

…One, very grateful double lung transplant recipient.

The second I step out of my car, I’m surrounded by a soupy, bone-chilling fog. 

I stand shivering for several minutes. There’s no way I can ignore the precious memory that has popped into my mind. 

It was summer, 1988.  The San Francisco fog was thicker than Clam Chowder. I swear, Dad and I needed white canes as me navigated through that fog. The ‘Tommy’s Joint Restaurant’ neon sign was our lighthouse. 

 It took Dad and I a life time to take off our cable-knit sweaters, our knitted scarves and, at long last — our Pea Coat jackets; so we could settle-into our corned beef and cabbage feasts. 

I can still see me rolling my eyes as Dad smirked and said, “You know, Mark Twain said, ‘the coldest winter I ever spent was a summer in San Francisco.’”  He loved saying that each and every time we bar-hopped or dined in ‘Our City.’

Yep… That was my ‘last supper,’ stateside, with my life time favorite friend – Dad.  

I’ve lived Down Under almost 30 years.  You bet, I can hear my dad laughing; as I smirk and say, “Fog on Australia’s beaches is as rare as hens’ teeth.”

Well, today, it’s a wintery day; and, it’s just me and the sparrows, up at the crack of dawn.   

With this fog so dense, I can’t help but feel it’s playing Blind Man’s Bluff. I get this premonition that I have no choice; but to let this fog take me for a walk. If it had feet, it’d be right on my heels.    

It’s getting thicker by the second.  I never knew fog could be pushy. Ok.  Give me a minute!  Like the wobbliest Flamingo, I stand on one foot at a time, yanking-off my mellow-yellow jogging shoes and rainbow socks.  

The chilled sand feels absolutely divine.  My toes are moaning in ecstasy.  Wouldn’t it be great if, in this sand, there were millions of microscopic sea creatures?  They could use the itsy-bitsy sand pebbles to massage my feet. I need something to stop me from worrying.  Today’s going to be my all-time greatest challenge.

Now, that fog’s just a few yards ahead.  It’s waiting for me.  Just where the waves break the shore, I plop.  I’m sitting Indian style in the ice-cold wave-soaked sand. 

I lean way back; until I almost topple.  I love this dawn’s limitless deep purple vista.  It looks like a velvet stage curtain. 

As with all my hundreds of dawn-to-sunrise observances, my imagination takes control.  And so… Behind that vast curtain there’s Mother Nature. I see her as ultra-feminine; yet, she’s very much, in command. Her eyes glisten with immeasurable optimism.  And her smile is more love-filled and blissful than Mona Lisa’s. 

She’s definitely a wizard. Every dawn and dusk, she turns her sky into a gigantic etch-a-sketch pad. Take now…  She’s adding snow-white wispy clouds. She turns this dawn into a luscious vista made of boysenberry ice cream and tiny marshmallows. 

Now, it dawns on me.  The fog has led to me to ‘them!’

There they are… The three twinkling stars and that fast-fading quarter moon!

“Good morning Mom, Dad, Carol and Jack!” 

From out of nowhere, a dreadful thought sneaks into my mind. Mom, Dad and Carol, will I also die in my 60s?

In the nick of time, I gaze up at that quarter moon.  “Hi, Jack! You always chase away my fears!  I have loved you to the moon and back, all these 31 years. Hey, I heard that Boy George song the other day.  I should’ve sang that one special lyric, to you back then.  Then, you’d understand how much I love you.  “…I have danced inside your eyes.”  There!  Just singing that, I can see your brown eyes with their flecks of green.”

“Yes, I know.  It’s time for ‘our little dawn ritual.’” My thermos warms my frozen hands.  I have exactly three cups of coffee; using Mom’s and Dad’s favorite coffee mugs and the one made by Carol. 

That ritual always brings them back to life.  I really feel Mom and Dad holding my hands; and Carol’s lethal horse fly slap. And, of course… There’s Jack’s tender kiss on my cheek.

“We’re all accounted for!  Let ‘the Show’ begin!”   

Remember the orchestra’s booming pageantry at the start of that cinematic classic, ‘Ben-Hur?’  Well, that pales to Mother Nature’s philharmonic, this dawn-to-sunrise.

She opens with her harps – her small waves’ gently, rhythmically and hypnotically strumming the shore.  Then, in come her heralding trumpets – flocks of squawking Seagulls.  And, just a moment before ‘Curtain Time,’ she adds her kettle drums’ crescendo – her giant waves crashing onto the shore. Their booming and thundering reverberates all through the beach.  Indeed, she’s an amazing maestro!

But wait!  There’s more!  On come her choreographed dancers.  She turns on her ‘black light.’ Now, her waves’ white caps look like ultraviolet-colored snakes.  They jive, bounce and slither the full length of the ocean.

Suddenly, She silences her trumpets, those Seagulls.  They swan-dive deadly-close to my ear.  “Hey, Carol, remember when you pierced my ears? I love how we got-up-to lots of mischief.”

Here comes Mother Nature’s special effects’ expert.  Every time I observe beach dawns-to-sunrises, it’s always the same guy.  He’s a freckle-faced, super tall… bean pole; with fiery red hair. He’s a hot-shot skateboard-rider.  Without a doubt, he is the world’s ‘Rembrandt of Graffiti Art.’

First, he speeds down the full length of the sky; erasing all its purple. But, he leaves Mother Nature’s snow-white wispy clouds. He zips right passed us; leaving fluorescent yellow stripes all across the sky.  Then, in a blink, he’s whizzing across the beach, his third time.  He’s spraying the laciest pinkie-orange streaks.  Fantastic!  He has created a second delicious vista –It’s strawberry and orange sherbet.

It’s 5.40AM!  Now, I’ll have to hurry!

The huge digital Citizen clock shows “5.55AM.”

Talk about a sea of people!  There has to be at least 5,000 spectators.   

The PA system squeals sending shooting pain deep into our ears. Then, this man’s voice is as grating as the PA’s squealing. It’s like he’s talking into a huge empty can.  He has this strange nasal, tinny and drawn-out twang.  He’s doing the worst impersonation of an old-time radio announcer.  “RRRunners… ggget… to the… ssstart!”

We runners are like sardines stuffed in a can.  No matter how I push and shove my way, I just can’t squeeze into a prime position.  It’s a mob of at least 10,000 runners.   

Immediately, my self-confidence gets into a punch-up with defeatism.  That sneak really hits below the belt; slugging me with self-doubt — Why the Hell am I running in a half-marathon race?  I’m 65!

      BANG!  And we’re off like a stampede of the pushiest two-legged cattle.

Well, I’ll be… That defeatism is down for the count. Thank you, Mom, Dad, Carol and Jack!  You’re making me run like a rabbit chased by a Dingo!

Hold on… What’s that frantic pounding sound? 

“Joanne!  Why’d you lock the door?” 

Damn. I’m plucked from my favorite dream.

After 730 days of this unforgiving End Stage lung disease, you bet I’m sick and tired of feeling I’m made of glass. With every movement – big or small – I have to move so gingerly.  If I don’t, then another tsunami wave of breathlessness pounds me and leaves me completely breathless for 5, to even 15 minutes. It feels like death and I have been in this wrestling match, 24/7.  He’s such an unscrupulous opponent. He thinks nothing of jumping on my squished lungs that are only 25% useful.

Jacqui must be freezing.  They’ve predicted there’ll be snow, by evening, here in Bothwell, Tasmania. 

At last, after at least 5 minutes, I manage to swing my legs off my hospital bed, which to me is more like a ‘practice coffin.’  It arrived 730 days.  I had my comfy couch hauled-away.  In one swoop, I had to give up both my bedroom and my living room.

“Hold on, Jacqui.” 

I’m hit by another breathless tsunami.  Now, my words come out like some telegram.  “Jacqui.  I have to do … that stupid drill … or … I’ll never … get to … you.”

I just don’t know what I’d do without Jacqui.  She’d win ‘Best In-Home Personal Carer’ of the century.

Under protest, I do ‘the drill.’  So, even when I’d give anything to inhale… I have to first, slowly exhale 3 times and then, finally, I can inhale through my nose and mouth.  No matter how breathless I am, I have to make even a little bit of room in my shrivelled lungs before trying to add more oxygen into them.

To save myself a few shuffled steps, I throw myself a yard forward, slamming my palms on the front door.   

I know I shouldn’t… but, I look over my shoulder.  I scowl at the wheelie-walker, I’ve shoved in the corner and covered with a beach towel.  To me, it’s nothing but the Grim Reaper’s Hearst — that wretched wheelie-walker.  I should, but… I won’t… surrender to using it.   

Jacqui’s twice weekly visits are my life’s sunshine. Yes, she does a great job of cleaning my house and washing my hair; but, more than that, she has been my only social life.

No matter how I’m rapidly getting worse, she just tucks any hint of worry behind her unconquerable smile.

And, she’s a master at rebooting my cheerfulness.  Like, take today…

“Hey! You’ve added a few more photos to your wall!”

Instantly, I feel really excited.

I keep forgetting that ‘excitement’ is a feeling I cannot afford.  It only brings-on breathless attacks that can last up to 15 minutes.   

It looks like this attack is in for the long haul.  Even calm Jacqui can’t camouflage her panic.  Urgently, she asks, “When are you going to ask for an oxygen cylinder?  When’s the last time you took that… uh… you know… that ‘medicine?’”

“No.  I … can’t have … bottled … oxygen.  I’m … too … carbon … dio…xide retentive.  That would … kill me.”

Much to my surprise, I squeeze out a mocking chuckle. “You just … can’t … say it.  ‘Ordine.’  It scares … you … We … both know … it’s just … liquid ‘Morphine.’ I took it … 5 hours …ago.”

Unreal!  I’m zapped by another tsunami bout of breathlessness! 

Jacqui shoves a pre-measured dose of ‘Ordine’ up to my quivering lips. 

That ‘Ordine’ is just like some rodeo rider.  It jumps on my bucking bulls – my bouts of breathlessness; knocking them out. 

That Ordine has kicked it real fast.  I better speed-talk while I can. 

“I’m 55 there.  I was living in nomad’s land — Outback, Queensland. Only 300 people lived in town. 1500 others lived on 90,000+ acre cattle stations. That’s a photo of me and some ladies from one of my fitness classes. They talked me into holding my ‘Ever Fit Classes’ at noon… In 104 degrees F heat. I miss looking that fit.  Heck. I did 5 classes, back-to-back, every weekday.” 

“I’m 50 there. I lived on my 25 acres in the lush Gold Coast hinterland.  Brush-cutting, chopping wood… caring for my quarter-acre vegetable patch and teaching 5 fitness classes, back-to-back, every weekday, at the surf lifesaving club… really kept me fit as a fiddle.”

Jacqui chuckles. “What are you doing with all that cattle?”

I can’t help but chuckle.  And, that throws me into another bout of breathlessness. 

Calm Jacqui, softly says, “Take your time.  I’m in no hurry.”

It seems the more I take ‘Ordine’ the less it helps me.  Like, right now.  It’s already deserting me.

  “That’s … when I was 59.  I … was living … in a town … of only 100 … That’s me perched on the rails above all that cattle. I … was drafting or separating … calves … from their moms. It was time to ‘wean them.’ That’s why graziers call them … ‘Weaners.’ Their mooing … lulled me … to sleep, every night.”

“Hey, you’re quite the dapper-dresser here.  How come?”

 “I was 39.  I was … a speech pathologist … in a hospital … and a … community health center.  By then … I had been a speech pathologist … for 17 years. Australia gave me … a chance to help … some really unusual cases.  Like, kids … with ‘Angle- man’s Syndrome.’ There were only 50 … reported cases … worldwide. Like Dolphins, they just played instead of slept.  I mostly helped … Stroke patients.”

            Jacqui’s whole face smiles.  “And that’s a photo of you with your daughter.”

I swipe a teardrop from my cheek. “That’s the last time … She … Saw me … healthy. I was 60 …. She…. was 34.  Wow… Almost 3 years ago.”

“I’ll… stop… talking.  You … have others … to see.  Heck. I can … barely move around my … home.  No wonder … it stays … so clean.  Just … wash my hair … please.”

But, as always, Jacqui does exactly as she wants … She cleans the bathroom and kitchen… And, she vacuums.  It’s amazing how the government only charges me $40/month for her to clean my house and wash my hair, twice weekly.

As I say goodbye to Jacqui, I wonder will I see her again; or will the Grim Reaper’s toying with me, finally kill me?

Let’s go back 731 days ago… back to ‘the beginning’ of my End Stage lung illness.

It’s Tuesday, November 12, 2013.  I do my daily routine: 30 minutes of prayer and meditation, an hour of resistant exercises, a 30-minute jog and then, 20 minutes of Yoga.  I spend the day writing a new short story.

No wonder I hit the hay at 7.30PM.

 I have another one of my favorite dreams… It’s of my 18-day-old grandson, Jackson… but in the dream he’s 21-months-old.  We’re playing Marco Polo in a pool.   

Then, from out of nowhere, I can’t catch my breath.  I catapult to sitting.  My digital clock shows “2.05AM.”  

In a split second, I‘m gasping at Remington speed.  

Panic shoves calmness and common sense from my head.  I’ve been gasping for 10 minutes?  I’m going to die! 

My poor cats’ meows become screams for help.  I wish I could scream.

I collapse, flat on my back.  My soul’s so gently talking to me… “It’s OK.  It’ll be nice to be with your parents and sister, again.”

My mind shouts, “How dare you talk her into giving up!”

Fear becomes the referee.  Thank God, it orders me, “Get into take flight mode, now!”  

Somehow, I dash to my neighbor’s apartment. It’s only about 3 yards away. I’m clawing and pounding on his front door.  In seconds flat, he’s holding me; and with his free hand, he dials ‘OOO.’

Once in Emergency, I’m frantically pantomiming, “Put me on oxygen!” 

I clutch the oxygen mask.  Again, I’m panicking.  I pantomime, “Turn it up!” 

In the most annoying calm and non-negotiable tone, the nurse says, “We can’t increase the oxygen flow.  You’re probably carbon dioxide retentive.  You could die.” 

Weakness and fright paralyze me as I lay helplessly back down, flat on my back, on this gurney.  Then, an orderly’s driving me to all sorts of places.  I get several blood tests, an X-ray and an EKG. 

When I’m finally rolled onto a proper hospital bed, I notice I’m in Isolation.  What a dungeon – there aren’t any windows and the door is kept shut. 

I have never felt this alone in my life. And that is so strange.  I’ve been basically living on my own most of my adult life.  I’ve always figured, the only way I have ever felt lonely was when I was in a lousy relationship.  But, now…  Loneliness is relentlessly choking me; and it isn’t letting up. It’s a night filled with breathless bouts around the clock.  I’m afraid to close my eyes… Afraid I might die… Well, it takes this night’s brush with death, for me to learn I only feel lonely if I am near death. How interesting… 

I’m told that some unidentifiable viral chest infection has permanently left me with only 25% useful lungs.

After 8 days, another neighbor drives me home. 

Ross parks next to my letterbox.  Just outside my car door, he sets up this wheelie walker. 

As he tries to put my hands on it, my glare burns holes in him. Sheer stubbornness propels me to power-shuffle.  Amazingly, I shuffle the 20 yards to my front door.  

Ross is right on my heels, ready to catch me. 

With my next string of scary gasps, he grabs me around my waist.  “My God!  Did you eat anything while in the hospital?”

I ignore him.  But, in my mind, I know that I lost 8 pounds, in just those 8 days.

I plop myself on my couch.  I know Ross is only trying to show he cares; but… He plants himself in a chair; and leans nearly nose-to-nose to me.

His facial expression drips with syrupy sympathy. He whispers, as if we’re at my funeral. “You’ve always been a petite woman; but… How are you going to get better?  You can’t shower or dress yourself; let alone cook!”

I snap.  “Hey! I’ve been taking care of myself, on my own, for at least 90% of my adult life!  From the way you’re talking, I may as well pack-in having a hope in Hell!”

For long minutes, he’s lost for words.  Then, consumed with shame, he whispers. “I forgot how the hospital arranged for in-home care.  Just maybe…” His voice cracks.  “Just maybe you’ll get better.”

After 8 days, in the hospital, with its constant interruptions… I’m hanging to be on my own… Well, just me and my two cats.

Thank God Ross is perceptive and he leaves.

 There’s one thing I just have to do, right away. I’ve just got to hide that despicable wheelie walker.  A beach towel does the trick. 

            I shuffle my way into my kitchen, using my furniture as crutches. 

            It takes me a dozen tries to open a flip-top can of chicken noodle soup. I’ve never been like ‘this’ — extremely weak.  And, the bouts of breathlessness, every few minutes, exacerbates my frailty. Managing only a few spoons of soup hardly warrants my grand can-opening feat.  I burst into gut-wrenching sobbing.  There I sit, slumped-over… Just like a fighter, down-for-the-count.  

            Even after 4 hours of blankly staring into space, I’m still just as confused and frightened. 

I head off to bed at the ridiculously early hour of 7PM. 

I smile at my queen size bed like it’s a long-lost friend.  I lie on my stomach, like I’ve done all my life.  Within seconds, I’m struggling to breathe.  Panicked, I flip over onto my back.  Now, I skip sobbing.  I’m down right wailing.   From the corner of my mind, pops up a tiny light of hope.  My mind grabs it. I tell myself, crying won’t fix me.  So, I just have to buck-up.

It’s like that tiny surge of hope lulls me into several hours of most-needed deep sleep. 

Then, a nightmare wakes me.  And, how eerie is this?  It wakes me just as my clock shines “2.00AM.”  That’s just 5 minutes before 75% of my lungs died, 8 days ago.    And what a vivid nightmare — Freddy Krueger’s running a movie projector.  He’s cackling with evil delight.  I’m the main star in this movie entitled, ‘2.05AM, Wednesday, November 13, 2013.’

Freddy chases me out of my bedroom. I make a bee-line to my 2-seater couch.  Lying on my back, I just fit. After hours of tossing and turning, I surrender.  I need a lamp ‘on’ or I won’t sleep.  Little do I know that I’ll need that lamp ‘on,’ all night long,  every night, for the next 3 months.

Okay! I’ve been home 3 days… enough lazing-around. Today, I start my ‘Fix My Lungs Programs.’  I try to power walk the perimeter of the huge lawn area, out the back. Okay, so it’s more like a ‘power shuffle.’ 

Today I’ve been home 30 days. I see my GP. I make myself march into his office. Shuffling would show I’m defeated.    

Instead, of looking at me, he’s talking to his pen as he rolls it back-and-forth on his desk.

As I brag about my ‘Fix My Lungs Program,’ pity plasters every inch of his face.  He’s back to talking to his pen. “That may slightly decrease your breathlessness. I admire your determination to uh…”

Then, stone-seriousness steels his face. He looks directly into my eyes. His voice could freeze the sun. “Maybe it was a form of pneumonia.  It destroyed 75% of your lungs.  Nothing will fix that.  You will have one lung infection after another for what’s left of your life. It’s hard to say how long you’ll live… Maybe months… The only two things you can do to somewhat postpone the inevitable is to keep-up with flu and pneumonia inoculations.”

I can tell that he can’t bear to look at me.  You’d think after all his years as a doctor he’d be used patients dying. He quickly scribbles two prescriptions. “Stay on your regime of short-term and long-term bronchodilators… ‘Atrovent’ and ‘Spiriva.’”

Saying that I walk out of his office with a “heavy heart,” is like saying “dying’s just a very temporary mood-killer.”

I just can’t go straight home because it’s nothing but an over-sized coffin. I cross the street to Bothwell’s park; and I sit under my favorite tree.  I cloud-gaze.  And just for a split second, I forget I’m near-death.  As a kid, I indulged in cloud-gazing every sunset.  But, now, at 62… There isn’t a cloud that can push-away my sadness — My parents died at 67. My sister died at 62. I’m next. I’m 62.  I always figured I’d live to be 90.

Well!  It’s November 13, 2014.  These past 365 days have flown by.  That’s good because I’m still alive!  That’s bad because I’m closer to ‘D-Day’ – dying. I still haven’t taken the beach towel off that wretched wheelie walker. And, I haven’t had any ‘Ordine’ (liquid Morphine) for 8 months. I’ve gotten pretty good at doing that ‘drill’ – exhale first, etc. I’ve had to reduce my 20 minute showers 10 minutes, with the steam making me breathless.  And, I have surrendered to the shower seat.  And, you bet I’m thankful that the government only charges me $50/year to borrow the hospital bed, shower seat and that horrible wheelie walker.

Just a few weeks ago, I had to give up my ‘power shuffle’ around the big lawn. I’ve lost at least 50% of my muscle mass. 

I weigh 85 pounds.  My normal weight has always been about 110 pounds.  I definitely do not have even a pinch-full of love handles.   My stomach is extremely concave…So, I haven’t seen my belly button in months.  I eat 7 meals-a-day. I blend this super high calorie drink: 3 scoops of high protein and fat ‘Sustagen,’ 3 scoops of vanilla ice cream, 3 tablespoons canned fruit in thick syrup, ¼ cup powdered almonds and ½ cup full cream milk.  Yet, I’m more than just skinny as a rake.

Now, it’s November 2015; and I’ve been near-death for 730 days. By some miracle, my state of health is in a holding pattern… Meaning, it’s no worse. 

I stick to having 7 meals-a-day.  I’ve upped having those blended drinks to 3 times-a-day. Yet, over these 730 days I’ve only gained 8 pounds. I weigh 93 pounds. I’m still 17 pounds underweight.   

One night, just as I settle into watching the 6.00 News, another tsunami of breathlessness clobbers me. 

Now, after 740 days of thousands of breathless attacks, I no longer panic.  Calm as all get out, I call ‘000.’ An advisory nurse and I discuss my condition. I’m told to take an ambulance to the hospital.

Because the symptoms mirror a heart attack, I’m seen immediately.  A blood test, an EKG and even an Angiogram show that I haven’t had a heart attack.

Because I’m in the Cardio Ward, I’m seen by a cardiologist.  And, I must say… what a tall, strapping and handsome man he is, too. 

He gives me the run-down – my heart’s absolutely fine.  I’ve just had my hundredth lung exacerbation episode.   

No sooner does he leave my room, when he U-turns.

 “Outside of you being as skinny as a rake…”

He slowly strokes his chin.  “…You look fairly healthy, despite only having 25% lungs left.” 

He stares at me for long minutes. Then, much to my joy (and surprise) his eyes light up like a pair of Christmas trees.  And, he’s so excited!  “Why haven’t you considered getting new lungs?”

Well!  You could knock me over with a feather! 

I feel this instant warmth filling every crevice of my heart and mind. It’s ‘hope,’ which, has been AWOL these last 748 days.

For the next 20 minutes, that wonderful doctor fills-me-in-on the transplant process.

I’m as bubbly as a freshly poured glass of champagne. 

Of course, the minute I get home, I’m online, searching everything about lung transplants.  The stats aren’t great.  85% of lung recipients survive the first year. 65% are still alive after the 5th year. 

The more I read, the faster that ‘hope’ heads for the hills.

Just before I fall asleep, I treat myself to reliving those hope-filled 20 minutes.  Hey, with my life quickly waning, you bet I grab any chance to relive ‘hope.’

But, today’s November 28, 2015 and… In 25 more sleeps, I’ll be hugging my daughter, her husband and my grandson!

They live just a 20-minutes’ drive away from that beach that fills my dreams.

 From Tasmania to Queensland, it’s a 3-hour flight.

I just can’t chance having bouts of breathlessness aboard the plane.  So, I pre-arrange for wheelchair support at all three airports – Hobart, Melbourne and Gold Coast. 

It’s now 773 days that I’ve been so sick.

Even though I have to leave my house in about an hour; I re-open my suitcase for the 5th time.  I just have to make sure my ‘bag of tricks’ is safely tucked-away. I had spent hours searching my brain.  At last, I found something Jackson and I can do, without me crumbling in a pile of breathlessness.  As, I shut my suitcase that final time, a tear trickles down my cheek.  I know I won’t be able to get down on all fours and play with him… like my mom did with Brie.

The second Jackson squeals “Granny G,” goose bumps pop up all over me.  How I have dreamt of this all these 773 miserable days.

The four of us chatter and laugh, filling every corner of their little house… and, every corner of my heart.  

I’m the first to wake up my second day with them.  I skip my first coffee… I have something more important to do.  I speed-shuffle to their coffee table, laying out the craft materials. 

We’re going to make a ginormous Christmas card for each pair of adults — Brie-Jason and Nana-Gramps (Jason’s parents).  Because Jackson is just 2-years-old, I’ve kept it very simple.  He’ll tear glittery papers and glue them to the big cards.  He’ll add some ribbons that I’ve pre-cut.

The minute we start, I’m a hostage to a whopping tsunami breathless bout.  I just cannot stop it, no matter what I do.  Those are the longest 10 minutes of my life. Little 2-year-old Jackson turns all his attention to Shaun the Sheep cartoons.  His giggles and laughing aren’t enough to dam my tears.

Even a simple craft is too hard for my lungs.  I feel just like a defeated boxer with my hope flat on its face… In an unquestionable ‘KO.’ 

It takes me several tries to lift myself up from sitting beside the coffee table. I just can’t let Brie or Jackson see my tear-drenched face.  In less than a minute, I manage to speed-shuffle a good 2 yards, into the guestroom.  I throw myself on the bed, burying my face into a pillow… Muting my life’s most sorrow-filled sobbing.

The rest of the day’s deafeningly quiet.  We’re all in a state of sad shock, that I couldn’t do even the simplest craft activity, with Jackson.

But, then, today, on my third day with them, Brie comes up with a fresh idea.  Instead of walking to their local park, she drives us.  She picks a spot where I can sit; and in a few shuffles, I can stand and push Jackson on the swing.

 

Brie’s a very talented hobbyist photographer.  She takes this amazing photo – of my skeleton hands with their bulging, oxygen-starved veins.  She entitles it ‘Beauty in Frailty.’

 

 

Our ten days have flown so fast.  Today’s my last day with them. 

I decide that we just can’t ignore these two elephants in the room.  First, there’s the fact that my incurable illness permanently bans me from playing with my grandson.  And, then there’s the second fact – I can die without any warning.  

            I just have to have a discussion with Brie. I have to try to help her be less afraid about my fate.            

The first time, it’s just Brie and me, I jump straight in — “Brie, I have to make sure that you know that I’m not afraid of dying.  I have to make sure that you know that I will accept it…” 

            Oh, no!  Now I’ve done it.  She’s immediately sobbing.  

            She drops her head. She desperately waves her hands… ordering me to drop the subject.

            Today, is our last park visit.

Brie snuggles-into me as we sit on a bench.  She gives my hand the most love-filled squeeze.  Her long inhale quivers.  I know her so well.  She’s desperately trying to work up some courage.  “Mom, it’s awful, for you, that you can’t play with Jackson.”

Two tears trickle down her cheek.  I look deep into her baby blue eyes.  Oh, no.  Now, they’re swimming in tears.  I can’t bear this.  “Brie, please.  You don’t have to talk about this…”

She squeezes my hand. She’s frantically shaking her head.  She coughs-away the tears dammed in her throat. “No, mom!  You have to listen!  I know you want to recount how wonderfully fulfilling your life has been… As a way to reassure me… that you’re alright about having to die.” 

            With her next tight hand squeeze, our eyes meet.  We’re both seeing right into each other’s soul. I swear, I also see my baby-blue-eyed little girl when she was Jackson’s age.  And, as she always does… She surprises me.  With steeled-courage, she says, “If you are happy about dying; I will try my best to not be sad.”

            “Brie, being here with you, Jason and Jackson has really made everything crystal clear to me.  All my life, I’ve always told myself that there isn’t anything I can’t do.  Every problem is just a case of mind-over-matter.”

I find the strength to vice-grip her hand.  I look her straight in the eyes.  “I am not going to let this lung disease take away my life time of can-do attitude.  My parents… all my ancestors would kick my ass if I dared do that.  So…”

             “I’ve decided to do everything in my power, to get on The Lung Waiting List.” 

            For the longest split second, we could hear a pin drop.  

Then, Brie’s laughing, to beat the band.  “That’s what I want to hear!”  We seal this ‘vow’ with the tightest-ever bear hug.

            With that decision done and dusted, I am more than ready to head home.

            Just into the final hour of my flight, a bout of breathlessness hits me. In record time, an air hostess puts an oxygen mask on my face.  I pat the cylinder like it’s my hero and best friend.  

            Once we land, an ambulance takes me to the hospital.

            I only stay for 2 nights.  But, because I have ‘a plan’ to save my life… This exacerbation episode’s just water off a duck’s tail.

            Spurred by sheer determination, I make myself march into the Lung Transplant Team meeting.   

Surely, the respiratory specialist will have writer’s cramp after signing 17 individual blood test forms and 9 individual referrals for medical tests.  Again, I’m so thankful that the government pays for all of that.

A handful of blood tests will build a ‘profile’ to use in finding matching lungs for me. That profile includes my blood type, tissue type and antigen markers.

I’m a little disappointed because I’m blood type O; which is ‘the universal type.’   I can give my blood to all other blood types. But, my donor has to also be a type O.  Things would be great if I was a type AB, A or B because then my donor could be any of those types.      

            Other blood tests include: CEA (checks for cancer), CMVIgM (checks for a common virus), CRP (checks for infections) and those that check for any sexually transmitted diseases… And of course, there are blood tests checking for HIV, Hepatitis, Chicken Pox, Shingles and any form thyroid problems.      

            And, as far as those 9 medical tests…

There are chest X-rays and CT scans to get a picture of my heart and lungs and the size of my lungs.   There are the Pulmonary Function Tests.  A clamp is placed on my nose and I breathe into a spirometer.  This measures the capacity and the function of my lungs.  There’s also this 2-hour pulmonary test; and it determines how my lungs process both oxygen and carbon dioxide.

An Electrocardiogram evaluates my heart’s rhythm; as a way to identify any potential problems before the transplant.  A Doppler Ultrasound is done, to check my blood flow across my heart’s valves.

I get a Pap smear and Mammogram done – to rule out any diseases.  If I was a guy, I’d get a prostrate check.

All these tests determine if I have health issues that could rule me-out as a double lung transplant recipient.  On the positive side, those tests indicate if I have any health issues that can be remedied…and then, I can go on The Lung Waiting List.

With all that done, it’s now late January 2016 – 813 days since I first fell ill.

You can bet that I’m nervous about my Tuesday, February 9, 2016 meeting with the Tasmanian Lung Transplant Team.

 What if the test results indicate I am NOT a good candidate for The Lung Waiting List?

A thought, sparkling with optimism, pops into my head. Brie was born on a Tuesday.  My appointment’s on a Tuesday. That’s got to be a good omen. 

The last time I sat before a team of 5 experts was in 1983.  I was among the 300 speech pathologist applicants for this one San Francisco hospital job. But, let me tell you… Having to sit before this Tasmania Lung Transplant Team truly has me shaking in my boots. I am putting my hope, for a second chance at life, in their hands. The Team consists of 3 Alfred Hospital staff from Victoria and 2 Royal Hobart Hospital staff from Tasmania.  From The Alfred Hospital, there are Dr. Frazier, a respiratory specialist, Jenny Walker, a social worker and Dave Faulk, the Transplant Coordinator.  From the Royal Hobart Hospital there are Dr. Cranston, a respiratory specialist and
Sandra Hardy, a physiotherapist.

Dr. Cranston is the first to speak.  “All your medical test results meet the criteria for you to be placed on The Lung Transplant Waiting List.” 

Yes!  Now, those previous butterflies are really flapping around; but in celebration!

            “BUT, you must gain at least 26-1/2 pounds before we can put you on The Waiting List.  You must be your strongest to withstand this major operation, which can take from 6 to even 12 hours.”

My eyes are as round as saucers. Then, without saying a single word, I aim my unshakable confident smile right at each team member, one at a time. And, naturally, I add, with cockiness, “So, I’ll see you in 4 months and I’ll be 2 jean sizes bigger.”

Dr. Cranston gives me a very encouraging smile and says, “But, there are two more things you must do. You must be assessed by our respiratory physiotherapist, Sandra; and you must, without fail, participate in her twice weekly respiratory gym program.”

Now, it has been 828 days since I first fell sick. You bet I have heaps of questions when I see Dr. Jensen, who has been my respiratory specialist all these 828 days. He explains how I have quantitatively met the selection criteria for lung transplantation.  My results are as follows:

·         My FEV1 or ‘Forced Expiratory Volume in one second’ has remained at about 18%.  That means, I can only exhale about 18% in one second through the spirometer.  The criterion is 20% or less.

·         My BMI or ‘Base Mass Index’ or per cent of body fat is only about 13%.  The criterion is 17-19%.  But, the team is giving me time to reach this criterion.

·         My dyspnea or breathless grade is ‘3’ — that means I have to stop every 100 yards of walking to catch my breath. The criterion is at least ‘3’.

·         My exercise tolerance, as measured by ‘the Six Minute Walk Test’ shows that in that time span, I can only walk 164 yards… and that is exactly the criterion.

The last measurement Dr. Jensen tells me is my ‘BODE Score.’  For what seems like endless minutes, he is looking every, except at me.  “Your ‘BODE Score’ is ‘7’ and that means the likelihood of you surviving for a total of 4 years… counting back to when you first fell ill…”

He nervously clears his throat.  “So… subtracting these past 2 years… The likelihood of you surviving for another 2 years is…18%.”

Then, my bravado really shrinks to pea size.  In my panicked mind, I hear that evil Freddy Krueger cackling and saying over-and-over again, “You’ll be dead in 2 years or less!”

I feel numb from head-to-toe as I shuffle to my car.  

As soon as I get home, I make a list of things that will help me stay my healthiest until I get my two new lungs —      

·         No alcohol because that makes me breathless.

·         Stay clear of airborne irritants (i.e. cigarettes, perfumes, strong scented disinfectants, paint/varnish fumes, petrol fumes, etc.). 

·         Re-build my muscle mass by faithfully participating in the respiratory gym twice weekly.  Try to do two 15-minute exercise sessions/week, at home.

·         Be super vigilant in terms of infectious control; by washing and/or sanitizing my hands a zillion times-a-day. 

·         Get immunised against flus and pneumonia. 

·         Stay away from crowds. 

·         Reduce eating at restaurants to nearly nil to avoid any chance of bacterial infection.  Swear-off eating at any ‘Bain Maries’ – where cooked foods are stored above boiling water.

·         Implement infectious control standards for all my cooking.   

·         Stop soaking pots, cooking and eating utensils as that breeds bacteria.

·         Eat 3000-5000 calories per day (7 meals and 4 snacks every day). 

·         Get good sleep.

·         No more shelled seafood.

·         No more mushrooms.

·         No more runny-yoked fried eggs.

·         Limit processed meats.

·         No more egg products such as mayonnaise.

…And the last and equally important thing to do is –

·         USE THAT DESPICABLE WHEELIE WALKER to reduce my rapid calorie-burning.

 

Eight weeks later, the Transplant Team sends me to The Alfred Hospital for what is called ‘A Meet and Greet.’  For 4 days I meet all sorts of transplant team staff – surgeon, dietician, physiotherapist, pharmacist and educational nurses.  The airfare and accommodations for this are all paid by the Australian government.

There’s this one bit of information that the lung transplant surgeon shares that sends shivers all through my body.  “Considering nationwide Australia, there are an average of 16 to 24 deceased organ donors per million people.  By the end of 2015, there were 195 lung(s) transplants…  Of the deceased lung donors, maybe 40% of those lungs are usable for transplantation.”

My all-time favorite appointment is with The Alfred Hospital’s social worker, Jenny.  We immediately connect as if we’re sisters. She has been the hospital’s transplant social worker for 24 years. She tells me how I can have partially supported accommodation for my 3 months’ rehab, post-transplant.  She adds that the Australian government pays the entire $9000 bill.

I’m back home, in Tasmania…

The first 12 respiratory gym workouts were a really hard pill to swallow.  I mean, I used to do 100 reps on the leg press, with its weights set at my body weight, back then… which was 110 pounds. Now??  I can barely do 5 deep lunges, even without any weights.  And, I’, the only gym participant who needs a wheelie walker.  

By my 888th day of being ill, I can zip around using my wheelie walker, without taking a sit-break except for every 20th step.  Before starting at the gym, I had to have a sit-rest every 8 steps.  

And Halleluiah!  Instead of needing my spacer/puffer dozens of times-a-day, I only need them about 4 times-a-day.  The gym workouts are not curing me; but; they sure are helping me.

Nothing can wipe the confident smile off my face as I speedily wheelie-walker- strut myself into the next Lung Transplant Meeting, June 16, 2016. It is my 963rd day of being ill. By golly… I am still alive; despite thousands of tsunami bouts of breathlessness.

And nothing can wipe the congratulatory smiles off each team member’s face when I weigh-in at 98 pounds…12 pounds less than the 110 pounds I have weighed all my adult life; but I gained the required 26-1/2 pounds!

I cherish how puzzled Dr. Cranston looks. “How did you do that?  Most people with lung diseases can only gain half that, in 4 months.”

I let out a big, long sigh.  “Well, every morning I make this really long list of every food I must eat between 7AM and 7PM.  I set my mobile phone alarm clock for every 60 minutes – that’s my feeding times, throughout each day.  I still can’t believe how I shoved between 3000 – 5000 calories into me, every day.”

Dr. Cranston checks each team member’s face.  And, then… with one most emphatic and quirky dip of his head, he announces, “You’re on The Waiting List!”

I just know, that from all the way up in Heaven… Dad, Mom and Carol (and Jack, from faraway Pennsylvania) have just whispered to each team member – “Put Joanne on The Waiting List!” 

With each bold and bouncy step to my car, my smirk takes over my whole face.   I hold onto the 4 blood test forms for dear life.  They are, in a way, my winning tickets for a chance at a second life. And, so, until I get that magical call, “Your lungs are here,” I must get a blood test at the end of each passing month, monitoring my health. 

The next 360 days fly by without a hitch… I mean, I’m not hospitalized. 

Then, starting in early February 2017 or around my 1,173rd day of this illness; my health goes completely pear-shaped.

Between early February and right through March 2017, I feel stuck in a nightmarish revolving door.  I’m in-and-out of the hospital at least 6 times… And each time, for 4 very scary days.  My weight plummets all the way down to that scant 72 pounds, of 14 months ago.  I’m extremely frail. It has been 90 days since I participated in the respiratory gym.  And worst of all, to date, I have been on The Lung Waiting List 9 long months.

Okay, so that Freddy Krueger nightmare has vanished.  But, it’s replaced with a new… There’s this massively muscle-bulging, 20-foot Boa Constrictor. It winds around me… It squeezes the life out of my courage, logic and hope.

Being sick now a total of 1,173 days, I find myself honing-in-on the faces of healthy people.  I ever so slowly scan their sparkling eyes and rosy cheeks.  For those fleeting minutes, I feel I’m like that little girl outside the pet shop… “How much is that doggie in the window.”  I’m on the ‘outside of being alive,’ looking into that exclusive, ‘Healthy Peoples’ Club.’

Maureen, my 52-year-old gym buddy dies.  It takes a lot of spiritual energy to hoists my hope even a little.

At my next Transplant Team meeting, there aren’t any smiles.  Again, I feel I’m at my own funeral.  Empathy imbues Dr. Cranston’s face.  “You’ll need a prescription for ‘Ordine’ (that liquid Morphine)… Hopefully to spare you having those so frequent breathless attacks… It could help you feel more comfortable.”

I’m lost for words.  I get the feeling my ‘end’ is coming very soon. 

Now, my showers only last 5 minutes; and I only have enough energy to shower twice-a-week.  I’m resorting to tasteless commercially produced frozen meals.  It’s getting harder to chase-away this dreadful thought – Maybe I should get admitted into palliative care – yes, like a nursing home.

Then, on my 1,187th day of this ruthless illness… around 2AM, April 9, 2017…

 “Hello?”

“Is this Joanne Galliher?”

“Uh… Yes.”

“This is the Transplant Coordinator, at The Alfred.  There’s a good chance we’ve got a very good match for you.  You need to get here…”

“Huh?  Uh… (Yawn)… Okay.  Thank you.”  And, with that, I lay back down, to resume that splendid dream… the one where I’m a half marathon runner.

I catapult to sitting straight up in bed.  “There’s a good chance we’ve got a very good match for you…” types across my mind like ticker tape.

I scream, “Hey, she did say that!  Geez, I gotta THINK!  What did she say after that?”

My heart’s pounding outside my chest. 

I’m so annoyingly groggy.  Again, I have to talk right out loud to keep my focus.  “She said I need to get dressed…  Make sure I have everything I need in my backpack…’’

“Damn.  I bet the clothes in the backpack smell moldy, after being in there all these…” I count on my fingers.  “…All these long, horrible 10 months.” 

I fiercely shake my head.  “Oh, to Hell worrying about THAT.  What else did she say?”

I glance at my clock.  It’s now 2.31AM. 

“Uh… she said I’m not to eat or drink anything.”

It must take me 20 minutes to put on a sweatshirt and sweatpants. I still need to do the harder thing; that is, put on my socks and shoes.  With me hunched-over, I really get breathless. Geez, Mom… I wish you were here to dress me!

My phone rings.  In a flash, I remember what that woman had said.  “I’ll call you back in about 20 minutes with more information.”

“Hello,” I squeak.

“Joanne Galliher?”

“Yes.  Of course I’m ‘Joanne Galliher!’  After all, that’s who you phoned!”

Guilt hits me.  “I’m sorry for barking at you.  It’s just that…”

“Don’t worry.  Believe me, I know you’re just so excited and anxious. I’ve arranged your flight.  Do you have someone to drive you to the airport?”

“Uh… YES!  My neighbor!”

“Without panicking… or speeding, make your way to the airport…”
           

“You do know, of course, that it’s at least an hour’s drive from where I live…”

“Yes, I figured that in.  Don’t worry. Your flight isn’t for another 3 hours.”

Once I get through the Security Check-In, I settle back into my airport wheelchair, caring less that I have a 2-hour wait. Thankfulness takes up every inch of my mind and heart.  Again, the Australian government’s paying for my flight… It’s also paying for the double lung transplant surgery, rehab and the 3 months’ recovery accommodation.

            I check my mobile phone.  It’s April 9, 2017.  It’s SUNDAY!  Wow!  I was born on a SUNDAY, 65 years ago.  And now, I’m about to be BORN AGAIN!

            I swear my big smile could kick my ears right off my head. I’ve got this internal town crier – “Joanne’s getting new lungs!  Joanne’s getting new lungs!”  So, I leave a phone message with everyone I know.  

            Just as I’m about to turn off my phone, it rings.  “Hey, Mom!  Whoo hoo!  You are AWESOME!  I LOVE YOU,” shouts Brie.  Now, THAT’S my tranquilizer for the hour flight!         

            An airport passenger assistant wheels me to the taxi rank.  I love her unbridled enthusiasm as she tells the taxi driver, “This passenger will make your day!  She’s going to the hospital to get 2 new lungs!  So, drive very carefully!”

The second we’re pulled-up outside Emergency, I’m instantly a nervous wreck.  I have no idea where I’m supposed to go…  Then…     

Someone flings open my car door.  It’s Jenny, the Lung Transplant Team’s social worker!  It’s astounding how after, now 26 years working so closely with lung recipients, her face still lights up like an ever-burning halogen bulb… so thrilled that someone else is getting a second chance at life.

            She hands the driver a voucher to pay for the taxi ride.

            I climb into the wheelchair feeling I’m about to have my most thrilling life experience.  Jenny and I jabber-away and giggle, like a pair of school girls.

            She is with me right up until an orderly takes control of my wheelchair.  I’m off to get a lot of tests – blood, X-ray and more.     

Time flies so fast.  I can hardly believe I’ve been in The Alfred Hospital 3 hours.

            Jenny’s back.  “You’ve got a really good ‘match.’ So…”

            She squeezes my hand, winks and says, “See you with your new lungs, soon.” 

            Wow.  From out of nowhere, Fear stabs me.  I, ever so gingerly, lay flat on my back.  There’s this faceless orderly driving me. The further he pushes me, the darker everything seems to get. It must be from that pill they gave me.

The corridors leading to the operating room are such a scary maze.  Then, I get this really ghastly and stupid thought — Now, I know just how John Coffey felt on his final walk to his execution, in that movie, ‘The Green Mile.’   

            Panic zaps all of me. Suddenly, I’m yelling at the orderly. “STOP!  I mean…”

I gulp and take in 3 very slow quivering breaths.  I soften my voice.  “I mean, would you please stop, just before the doors to the operating room?  I want to close my eyes. I don’t want to see any of the operating room… ‘Ignorance is bliss;’ if you know what I mean.”

            His gentle pat on my shoulder says a lot.  And my sweaty hand pat, on his hand, is my heartfelt “Thank you.”

Just as the anesthesiologist is about to give me instructions, a most-comforting thought pops up in my mind… Hi Mom, Dad, Carol and Jack!  I know… you’re each with me.

Then, who knows how much time passes.  Maybe, even days…

            Someone’s talking right into my ear.  “Joanne.  Come on.  Open your eyes.  Time to wake up.”

            Everything’s so dark.  It’s like I’m on that Disneyland ride, ‘The Blue Bayou.’  Everywhere that I look up, it’s like an endless black and purple sky.  I think I also see wispy clouds and trillions of stars.  But…

            Now, my mind’s really freaking out.  I can’t open my eyes!  What’s going on? Am I still asleep?  Am I dreaming? This is freaking me out! 

            “Joanne.  You hear me.  I know you hear me. Come on.  You can do this… Wake up.”

            I listen very intently. 

Then, I don’t hear that woman anymore.  Whew. Thank God.  I really think she’s an alien from outer space… Holy smokes! Have I been abducted by aliens?

            Now, my mind’s really screaming.  Damn it!  Open your eyes right now!

            I think my eyes are open.  I can’t tell.

            All I see is more of that ‘Blue Bayou’ kind of sky.  But, now, I can hear murmuring voices and really strange beeping sounds.

            I think I’m shaking my head.  I can’t tell.

            There’s that strange lady again.  She’s talking into my ear as if it’s a mic.   “Excellent!  It’s wonderful to see you wide awake!  You’ve been in induced coma, on a ventilator for 3 days.”

            Thank God the penny drops.  I’m in the ICU!  I’ve had a double lung transplant!

            A smile fills my whole face.  I close my eyes.  I start to take in what will be the biggest… the deepest breath of air…

            Unbeknown to me, that nurse is watching me.  In seconds flat, she’s at the side of my bed.  “I’ve seen so many lung recipients taking their very first deep breath… It is such a miracle! I love watching that every time.”

Well, it has been 1,190 days since I had the pleasure of inhaling and exhaling over-and-over again.  I almost hyperventilate. 

I’m sure I have a Cheshire grin on my face right up until I doze off.

I guess it’s many hours later.  My talking in my sleep jolts me awake.  “Hey everybody!  I can breathe!  I can BREATHE!”

“Hey, you!  You’re nearly shouting the ICU walls down,” scolds Jenny (the social worker)… Adding a string of chuckles.  

            I tuck my chin into my chest, pretending to be coy. Then, I whisper. “I can breathe, Jenny!”

            But, she’s no longer smiling.  Instead, her attention’s somewhere else.  That’s when I notice these 3 doctors, congregated at the foot of my bed.    

            “I’m Dr. Wood and my colleagues and I aren’t real happy with your oxygen saturation levels.  We thought that after 3 days in induced coma, it was safe to remove all those tubes; and take you off the ventilator.  But…”

            My voice shrills.  “Has my body rejected the two lungs, already?” 

            He and the other 2 doctors quickly shake their heads. Then, he says “Oh, absolutely not.  It’s just that we think you need to put back on the ventilator. Because you were so frail and sick…”

            My eyes are as big as saucers.  “Do you mean I have to be operated on, again?”

            Then, he ever-so benignly says, “We’ll just have to do a tracheostomy.”

            “You need to put a HOLE in my throat?”            

He starts to explain the procedure; but, I’m fiercely shaking my head.  “I don’t want to know HOW… Just do it.”

…       

 It’s my 4th day after my double lung transplant.

Here’s a new voice.  “No!  Joanne!  Lay back down!”

I try to talk; but I can’t.  Oh, how I wish I could scream, “I can’t LAY DOWN!  I’m burning-up!  I need a cool shower!”

I figure it out.  She’s a nurse. 

She dashes out of my room. She returns with two male nurses.  It takes the three of them to pin me to the bed.

But, I break free from their grips and pantomime that I‘m very hot.

That nurse quickly puts cold compresses on my forehead and chest.  But, I’m still on fire.  Ever so calmly she says, “It’s a common reaction to the anti-rejection medications… Feeling as if on fire.  It will pass.” 

I try to sleep on-and-off.  For at least the last 30 hours I bet I’ve been running the poor nurses off their feet; giving me cold compresses, every hour.     

It’s my 16th day, in the ICU.  I feel so jealous of the other transplant patients.  They only stay in the ICU 3 days.

But, one thing good happens today.  I get 3 visitors.  It’s Bill, the physiotherapist and 2 student physiotherapists.  “Okay,” says Bill. “Time to get your pins moving again!”

What a production!

First the nurse disconnects my catheter.  Then, much to my surprise, I’m unhooked from the ventilator. 

What a shock.  I manage to sit up.  I manage to swing my legs off the bed.  But, the second I’m on my feet, I collapse like a ragdoll.  I had no idea I would lose this much muscle just by being in the ICU 16 days. 

Once the trio leaves, unswerving determination takes over.  I spend the rest of today, practicing getting off the bed and standing.  For motivation, I’m singing that song – “Everybody’s doing the locomotion…” 

Bill surprises me with a second visit.  “Hey!  I’ve watched you without you knowing it.  Way to go!  You’re going to kick lots of goals, Joanne!”

            Well, at last, after 21 days in the ICU, I’m allowed to drink… Well… SIP water.  It’s really hard to sip like some Hummingbird when you’re dying of thirst.  And, I’m yearning for anything that’s even slightly chewable… even just porridge.  But, all these 21 days, I’ve only been given Jell-O, 3 times-a-day.

I haven’t been able to utter a single word all these 21 days.  I try writing messages; but, another medication reaction kicks-in… My hands and fingers are continually trembling.  

            Here it is my 25th day since my transplant. 

“Hey, Joey!  It’s ‘moving day,’” says Bill with delicious exuberance.

            He leans in closer to my beaming face.  “And I come bearing a gift!”

            He thrusts this small tube-like thing an inch off my nose. 

            He gently screws it into my trach.  

            “Go for it! I’m dying to hear you speak!”

            “G’Day, Bill!  How ya doin’?” 

            And, we’re chatting and laughing to beat the band.

 

As of today, it’s now my 32nd day since my transplant.   One of the most chipper nurses is my evening nurse.  Chloe’s always bright-eyed and full of smiles.  But, not so tonight.  I’ve never seen her this serious.

 “The doctors want you to be unhooked from the ventilator for the next 12 hours.”

“Huh?  They want me to breathe on my own while I’m dead asleep?  B-B-But what if I can’t breathe?  I-I I could die and no one would know!”

Chloe’s smile’s back. Thank goodness. “Joanne, every time we take your Ops — your blood pressure, your oxygen saturations — What does it show for your saturations?  Go on.  Tell me.”

I mutter, “100%.”

“Yes!  Precisely!  Your two lungs are A-1.  They won’t let you down.  And every time you go for your strolls, you’re off the ventilator – right?”

She squeezes my hand.  “You’ve got to start believing that your new lungs will keep you alive.”

Well, of course, it takes me at least 2 hours to fall asleep.

Then, around midnight, Chloe comes back and does my Ops, again.  “See?  You’ve been breathing on your own; without the ventilator…”

She checks her watch.  “…for 5-1/2 hours.”

Just 5 minutes after she leaves, I feel like my heart’s pounding in my head.  I’m as breathless as I was before I had the transplant.

Within seconds of pushing my call button, Chloe’s beside my bed.  “Okay.  All you need to think about now is…”  She slowly inhales and then as slowly exhales.  “All you need to do is make yourself relax.”

Tears stream down my cheeks; but I manage a nod. 

She’s so calm. “I’ll hook you up to the oxygen.  I have to get the doctor.” 

I grab her arm and pantomime “Turn up the oxygen.”

With double the calmness, she says, “We can’t chance you being carbon dioxide retentive.  Joanne…”  Her eyes penetrate mine.  “You’ve got this – honestly, you do.”

In record time, there are three doctors and Chloe in somber consultation, at the foot of my bed.  I wish I could hear what they’re saying; but, it’s as if my hearing has faded… Maybe, because I’m starved for oxygen?

Then, one of the doctors stands at my bedside. “Joanne, your blood pressure… your heart rate… have plummeted to dangerously very low. We’ll put you on a special IV to quickly hydrate you.”

Within an hour, that horrible breathlessness disappears. As a precaution, I’m put back on the ventilator.

Chloe has had to pull a double shift.  It’s astounding how she just goes and goes like some ‘Ever Ready’ battery.

She looks at me inquisitively.  “Not to alarm you… But, you’ve been clasping your left hand all night, as you slept.  Are you feeling any numbness?”

“No.” I just have to chuckle. “It’s just this thing I started doing about 6 years ago.  My sister died and so since then, well… and with Mom and Dad gone too… I was on my own.  So, whenever scary stuff happens, I… Well, ‘I hold my own hands.’ That makes me feel like Mom, Dad and my sister, Carol; and my daughter, Brie… and dear Jack are holding them.”

            And, for the next 7 days, I’m completely incontinent… wetting my bed every hour on the hour. Even though the nurses are happy to change my diapers, embarrassment drives me to I do that myself.    

            Now, to-date, I have seen at least 4 lung transplant patients discharged.  They didn’t have any complications.  And, so on their 13th day post-transplant, they moved into their self-contained apartments, with their care person (i.e. spouse, family member or friend).  With this my 39th day since my transplant, my acute care or hospital stay has been well-over double theirs.

But, on the brighter side… Every day, I get disconnected from the ventilator for an hour, now-and-then. I put on an infectious-control face mask and go for my wheelie-walker 2 laps around the ward.  I love the nurses’ encouragement.  “You’re sure kickin’ goals!”  “You’re getting speedier every day!”

Now, after 47 days since the transplant, something absolutely monumental is going to happen.  The trach is being removed, since I’ve been off the ventilator for 8 straight days and nights. 

Six student nurses crowd around my bed.  I feel like a circus act; but, it’s nice to be part of their training.

Chloe says, “Okay, Joanne, take in a big breath of air.  Hold it… Now, exhale as hard and as long as you can!”

Without a hint of pain, out comes the trach. Everyone’s clapping.

The nurses are so well-wishing.  A few of them crowd around my bed just to watch me eat my first real meal, after 41 straight days of having nothing but Jell-O three times-a-day.

The pharmacist visits me.  Now that I’m no longer on nasogastric feed (tubing down my nose, to my stomach), I need to start orally taking all my medications. 

Fear instantly strikes me as she shows me the 4 full pages of my required medications.  And, I instantly panic when she tells me that she has come to teach me how to load my weeks’ medication container. It’s called a ‘dosette’ and it is a huge 7 X 10 inches.  I can barely pay attention because I’m fixated on the amount of tablets I will be taking.  I lost count at 25, just for the morning tablets.  I lost count at 15, just for the evening tablets.  My mind’s freaked – If I make a mistake laying out my medication my body could reject my two new lungs… I could die!

Just as she’s about to leave, she pats my trembling hand.  “Don’t worry.  You won’t have to take this many, for life.  Over time, it will more than decrease by half.” 

Nonetheless, I can’t help but lay the longest ever minutes, paralyzed with fear.

Okay, now as of today, I’ve been in acute care 3-1/2 times longer than most lung transplant patients.  Yep – today marks 48 days since my double lung transplant.

I am feeling so sleepy.  I can barely keep my eyes open long enough to take my 15 evening tablets. 

After today’s really good hour-stint with the physiotherapist, you bet I can’t wait to close my eyes; and enjoy a good night’s sleep.

After years of lung problems, I can only fall asleep with me lying on my back.  So, down I go…

All my previous pleasant drowsiness instantly vanishes.  The whole back side of me – the back of my head, my shoulder blades, my butt, my thighs and heels are instantly on fire.  I try to lay on my side; but, that sends unbearable shooting pains all through my chest. 

I leap from my bed; and shuffle my way to the nurses’ station.  By now I can’t stop my tears. 

A nurse helps me back to my room.  I’m not game to lay down. 

After consulting, we decide that I might be allergic to the rubber mattress.  But, even after piling 3 blankets on it, I’m still on fire.

For the next 7 nights, my whole back side’s on fire, for at least 6 hours after I take my evening medications.  I’m only getting about 4 hours of sleep each night.

Thank God the Respiratory Registrar suggests that I may be having a reaction to the Tacrolimus medication. She prescribes some over-the-counter antihistamine.  At last, that on-fire sensation vanishes, just 6 days shy of what could be my ‘Diamond Anniversary’ of being in the hospital…60 days.

Okay, now I’ve been hospitalized 4-1/2 times longer than the other lung transplant patients.

But, hey… I’m being discharged today!

The nurse who helps me with my last hospital shower has shock-horror written all across her face.  “Joanne, you’re so skinny.”

I hang my head.  “Yeah, I know.”  I cast my eyes down my chest and feel each severely protruding rib. My skeleton-like chest looks like a Christmas tree stripped of its needles.  Then, I look straight down.  I can’t see my stomach because it is severely concave. Stupid me.  I weighed myself yesterday.  I’m 72 pounds.

I study that nurse, from head-to-toe.  “I bet you weigh about 110 pounds.  That’s what I’ve always weighed since I was 20.  But, hey… I heard there’s a fantastic chef at the supportive living place where I’ll stay for the next 3 months.  I’ve seen its website.  There’s only 33 residents.  I’ll have my own room and bathroom.  I’ll have 3 chef-cooked meals-a-day; and someone will clean my room and do my laundry once-a-week!  It’s unreal how the Australian government will pay the full $9000 bill.”

With every day feeling like that movie – ‘Groundhog Day,’ I’m ecstatic that I’ll at last, start the 12 weeks of rehab.  Every Monday, Wednesday and Friday I’ll attend ‘Clinic’ and an hour of respiratory physiotherapy. 

‘Clinic’ means I’ll be seen by respiratory specialists, a dietician and a pharmacist – all to make sure I’m in optimum good health.  The respiratory workouts are 100% on resistant equipment – i.e. treadmill, stationary bike, leg press, pull downs, etc.  At the end of the 12 weeks, I must be able to walk what now seems impossibly too far… 547 yards, in ‘The Six Minute Walk Test,’ before I’m allowed to fly home.

Today’s my second day at the special accommodations. Just as I start to say “good morning” to the other residents, I’m stuttering just like that Looney Tune character, Porky the Pig.  As I take my 3rd forkful of perfectly cooked, fluffy scrambled eggs… I feel an instant wave of morning sickness. 

In terms of my nausea, the in-clinic respiratory specialist doctor tells me that I might be having a temporary reaction to 3 very necessary anti-rejection medications. 

Try as I might to overlook the stuttering and the nausea; neither shows any signs of going away anytime soon.  Oh well, I figure I’d rather throw up, have the shakes and stutter everyday then not have these two perfect lungs.

I’ve been hanging to give my new lungs a real test drive, since I arrived here.   So, today I’m off to the closest shopping mall.

You bet I want to yell out, “I’ve just walked 3 hours without needing a sit down break!”

Oh, how I wish the taxi driver would speed…

The minute I walk into my room, I dash to the toilet.  Talk about ‘it’ coming outa both places, at once…  After an hour of non-stop vomiting and diarrhea, I phone for an ambulance.  I just can’t risk vomiting up all my life-saving anti-rejection medications.

Yep, you guessed it. I’m back in the hospital. I’ve been here 3 weeks.  I still have vomiting and diarrhea, non-stop. I’d be surprised if I weigh even 70 pounds now.  Even watching food ads on TV makes me run to the toilet. 

Being back in the hospital… I’m so depressed… I’d have to look up to see down.  At this rate, I’ll never go home…  I’ll never see my cat again. 

But, thank God for Gabriella!  She’s still my Outreach Worker (counsellor); even though I’m so far from home.  It’s as if she can read my heart.  It seems whenever I’m at my lowest ebb, she phones me.  All she ever has to say is “Joey, you’ve got this.  You have awesome inner strength…”  I’ve lost count of how many times she has lifted me from the deepest darkest depressions.  And, then… she and her husband fly from Tasmania to Melbourne.  Granted it’s to celebrate his birthday… But, they visit me too!

I’m discharged after 5 weeks. Finally, the bouts of diarrhea only happen after each meal.  But, that means I’ve got little chance of putting on much needed weight.  The nausea hasn’t let up… It’s still 24/7, even 5 weeks later.  And, I still sound like Porky the Pig.

In order for me to complete the required respiratory gym program, I must spend a good 30 minutes in the bathrooms, just outside the gym… vomiting and pooping-out the toast I had for breakfast.  This goes on the whole 12 weeks. 

At long, long last I’m homeward bound!  I’m confident that I will cover the required 547 yards in ‘The Six Minute Walk Test,’ so, I strut into the gym, like the cockiest hen in the house… Pulling my packed suitcase behind me. Well! Talk about a big change from 1,187 days ago?  Back then, when I first got sick, I could only walk 164 yards in ‘The Six Minute Walk Test.’ Today, I more than clinch it.  I walk 567 yards – Yes!  That’s 20 yards more than what’s required to go home. 

Due to the tummy problems, I’ve got a bit of work ahead of me to get from 33kgs or 72 lbs up to my normal weight (what I weighed age 20 until I got sick at 62) 51 kgs or 110 lbs.

 

Today is June 22, 2018.  My new lungs and I have been together 438 days.  I have been home for 262 heaven-sent days. 

Okay, so that daily non-stop nausea of 2 months plagued my first 90 days back home… I still feel, those 90 days of misery is an itsy-bitsy sacrifice, to have these two extraordinary lungs.

Here’s my list of ‘favorite things’: 

·         Snuggling with my BFF (Katie, my cat), every single day.  My other BFF cat (of 10 years) died while I was in rehab.

·         Doing 60 minutes of toning + 30 minutes of cardio (jogging or stationary biking) + 20 minutes of Yoga.

·         Doing every aspect of housework, gardening, cooking and grocery-shopping

·         Standing, while I shower for 20 minutes every day

·         Doing lots of creative writing

·         Ending each day with me dancing to 3 of my favorite 1980s tunes

·         At least twice-a-week, sitting on this bench, out the back… gazing at those 3 twinkling stars (Mom, Dad and my sister – Carol) and at the moon, no matter how faint it, (Jack) seems.  

·         Falling asleep, unafraid of dying; and knowing, those most-special 4 people are with me, ‘with every breath.’

·         Volunteering to deliver meals to the elderly and the sick.

·         Adding itinerary to my ‘50 Days’ Road Trip’ through 7 Australian states, scheduled for October 2019.

·         Only having to take 9 AM medications and only 3 PM medications.

·         No longer inflicted with nausea or diarrhea.

·         Doing 3 hours of cooking and portioning the meals into one-serve frozen meals.

·         Weighing 108 pounds!

Here’s Me at 66, August 2018 16 months after my double lung transplant.

 

 

 

Please be a registered organ/tissue donor – Online at www.donatelife.com  One organ donor can save 10 lives & one tissue donor can improve at least 30 lives.

And, I can hardly wait until early 2019.  I’ll go on the road, with my ‘SOS – Save Our Sick Campaign.’  I’ll do my free 70-minute presentations, before many community groups and clubs… All to encourage people to increase Tasmania’s current registered donor figure of 49%. But Dec 16 2018 is another project of mine:  go to “Joey & John Walk & Swing 9 to 3” at my website:  www.wavesofoneseawriting.com … and at that website is SOS – Save Our Sick too.  If you belong to a group/club – why not invite us to share these 2 free projects?  

Thank God one donor saved my life!

The End

 

ith Every Breath  

…a tale of struggle, survival & CELEBRATION

*Inspired by a true story

As Lived by and Written by Joanne E Galliher

…One, very grateful double lung transplant recipient.

The second I step out of my car, I’m surrounded by a soupy, bone-chilling fog. 

I stand shivering for several minutes. There’s no way I can ignore the precious memory that has popped into my mind. 

It was summer, 1988.  The San Francisco fog was thicker than Clam Chowder. I swear, Dad and I needed white canes as me navigated through that fog. The ‘Tommy’s Joint Restaurant’ neon sign was our lighthouse. 

 It took Dad and I a life time to take off our cable-knit sweaters, our knitted scarves and, at long last — our Pea Coat jackets; so we could settle-into our corned beef and cabbage feasts. 

I can still see me rolling my eyes as Dad smirked and said, “You know, Mark Twain said, ‘the coldest winter I ever spent was a summer in San Francisco.’”  He loved saying that each and every time we bar-hopped or dined in ‘Our City.’

Yep… That was my ‘last supper,’ stateside, with my life time favorite friend – Dad.  

I’ve lived Down Under almost 30 years.  You bet, I can hear my dad laughing; as I smirk and say, “Fog on Australia’s beaches is as rare as hens’ teeth.”

Well, today, it’s a wintery day; and, it’s just me and the sparrows, up at the crack of dawn.   

With this fog so dense, I can’t help but feel it’s playing Blind Man’s Bluff. I get this premonition that I have no choice; but to let this fog take me for a walk. If it had feet, it’d be right on my heels.    

It’s getting thicker by the second.  I never knew fog could be pushy. Ok.  Give me a minute!  Like the wobbliest Flamingo, I stand on one foot at a time, yanking-off my mellow-yellow jogging shoes and rainbow socks.  

The chilled sand feels absolutely divine.  My toes are moaning in ecstasy.  Wouldn’t it be great if, in this sand, there were millions of microscopic sea creatures?  They could use the itsy-bitsy sand pebbles to massage my feet. I need something to stop me from worrying.  Today’s going to be my all-time greatest challenge.

Now, that fog’s just a few yards ahead.  It’s waiting for me.  Just where the waves break the shore, I plop.  I’m sitting Indian style in the ice-cold wave-soaked sand. 

I lean way back; until I almost topple.  I love this dawn’s limitless deep purple vista.  It looks like a velvet stage curtain. 

As with all my hundreds of dawn-to-sunrise observances, my imagination takes control.  And so… Behind that vast curtain there’s Mother Nature. I see her as ultra-feminine; yet, she’s very much, in command. Her eyes glisten with immeasurable optimism.  And her smile is more love-filled and blissful than Mona Lisa’s. 

She’s definitely a wizard. Every dawn and dusk, she turns her sky into a gigantic etch-a-sketch pad. Take now…  She’s adding snow-white wispy clouds. She turns this dawn into a luscious vista made of boysenberry ice cream and tiny marshmallows. 

Now, it dawns on me.  The fog has led to me to ‘them!’

There they are… The three twinkling stars and that fast-fading quarter moon!

“Good morning Mom, Dad, Carol and Jack!” 

From out of nowhere, a dreadful thought sneaks into my mind. Mom, Dad and Carol, will I also die in my 60s?

In the nick of time, I gaze up at that quarter moon.  “Hi, Jack! You always chase away my fears!  I have loved you to the moon and back, all these 31 years. Hey, I heard that Boy George song the other day.  I should’ve sang that one special lyric, to you back then.  Then, you’d understand how much I love you.  “…I have danced inside your eyes.”  There!  Just singing that, I can see your brown eyes with their flecks of green.”

“Yes, I know.  It’s time for ‘our little dawn ritual.’” My thermos warms my frozen hands.  I have exactly three cups of coffee; using Mom’s and Dad’s favorite coffee mugs and the one made by Carol. 

That ritual always brings them back to life.  I really feel Mom and Dad holding my hands; and Carol’s lethal horse fly slap. And, of course… There’s Jack’s tender kiss on my cheek.

“We’re all accounted for!  Let ‘the Show’ begin!”   

Remember the orchestra’s booming pageantry at the start of that cinematic classic, ‘Ben-Hur?’  Well, that pales to Mother Nature’s philharmonic, this dawn-to-sunrise.

She opens with her harps – her small waves’ gently, rhythmically and hypnotically strumming the shore.  Then, in come her heralding trumpets – flocks of squawking Seagulls.  And, just a moment before ‘Curtain Time,’ she adds her kettle drums’ crescendo – her giant waves crashing onto the shore. Their booming and thundering reverberates all through the beach.  Indeed, she’s an amazing maestro!

But wait!  There’s more!  On come her choreographed dancers.  She turns on her ‘black light.’ Now, her waves’ white caps look like ultraviolet-colored snakes.  They jive, bounce and slither the full length of the ocean.

Suddenly, She silences her trumpets, those Seagulls.  They swan-dive deadly-close to my ear.  “Hey, Carol, remember when you pierced my ears? I love how we got-up-to lots of mischief.”

Here comes Mother Nature’s special effects’ expert.  Every time I observe beach dawns-to-sunrises, it’s always the same guy.  He’s a freckle-faced, super tall… bean pole; with fiery red hair. He’s a hot-shot skateboard-rider.  Without a doubt, he is the world’s ‘Rembrandt of Graffiti Art.’

First, he speeds down the full length of the sky; erasing all its purple. But, he leaves Mother Nature’s snow-white wispy clouds. He zips right passed us; leaving fluorescent yellow stripes all across the sky.  Then, in a blink, he’s whizzing across the beach, his third time.  He’s spraying the laciest pinkie-orange streaks.  Fantastic!  He has created a second delicious vista –It’s strawberry and orange sherbet.

It’s 5.40AM!  Now, I’ll have to hurry!

The huge digital Citizen clock shows “5.55AM.”

Talk about a sea of people!  There has to be at least 5,000 spectators.   

The PA system squeals sending shooting pain deep into our ears. Then, this man’s voice is as grating as the PA’s squealing. It’s like he’s talking into a huge empty can.  He has this strange nasal, tinny and drawn-out twang.  He’s doing the worst impersonation of an old-time radio announcer.  “RRRunners… ggget… to the… ssstart!”

We runners are like sardines stuffed in a can.  No matter how I push and shove my way, I just can’t squeeze into a prime position.  It’s a mob of at least 10,000 runners.   

Immediately, my self-confidence gets into a punch-up with defeatism.  That sneak really hits below the belt; slugging me with self-doubt — Why the Hell am I running in a half-marathon race?  I’m 65!

      BANG!  And we’re off like a stampede of the pushiest two-legged cattle.

Well, I’ll be… That defeatism is down for the count. Thank you, Mom, Dad, Carol and Jack!  You’re making me run like a rabbit chased by a Dingo!

Hold on… What’s that frantic pounding sound? 

“Joanne!  Why’d you lock the door?” 

Damn. I’m plucked from my favorite dream.

After 730 days of this unforgiving End Stage lung disease, you bet I’m sick and tired of feeling I’m made of glass. With every movement – big or small – I have to move so gingerly.  If I don’t, then another tsunami wave of breathlessness pounds me and leaves me completely breathless for 5, to even 15 minutes. It feels like death and I have been in this wrestling match, 24/7.  He’s such an unscrupulous opponent. He thinks nothing of jumping on my squished lungs that are only 25% useful.

Jacqui must be freezing.  They’ve predicted there’ll be snow, by evening, here in Bothwell, Tasmania. 

At last, after at least 5 minutes, I manage to swing my legs off my hospital bed, which to me is more like a ‘practice coffin.’  It arrived 730 days.  I had my comfy couch hauled-away.  In one swoop, I had to give up both my bedroom and my living room.

“Hold on, Jacqui.” 

I’m hit by another breathless tsunami.  Now, my words come out like some telegram.  “Jacqui.  I have to do … that stupid drill … or … I’ll never … get to … you.”

I just don’t know what I’d do without Jacqui.  She’d win ‘Best In-Home Personal Carer’ of the century.

Under protest, I do ‘the drill.’  So, even when I’d give anything to inhale… I have to first, slowly exhale 3 times and then, finally, I can inhale through my nose and mouth.  No matter how breathless I am, I have to make even a little bit of room in my shrivelled lungs before trying to add more oxygen into them.

To save myself a few shuffled steps, I throw myself a yard forward, slamming my palms on the front door.   

I know I shouldn’t… but, I look over my shoulder.  I scowl at the wheelie-walker, I’ve shoved in the corner and covered with a beach towel.  To me, it’s nothing but the Grim Reaper’s Hearst — that wretched wheelie-walker.  I should, but… I won’t… surrender to using it.   

Jacqui’s twice weekly visits are my life’s sunshine. Yes, she does a great job of cleaning my house and washing my hair; but, more than that, she has been my only social life.

No matter how I’m rapidly getting worse, she just tucks any hint of worry behind her unconquerable smile.

And, she’s a master at rebooting my cheerfulness.  Like, take today…

“Hey! You’ve added a few more photos to your wall!”

Instantly, I feel really excited.

I keep forgetting that ‘excitement’ is a feeling I cannot afford.  It only brings-on breathless attacks that can last up to 15 minutes.   

It looks like this attack is in for the long haul.  Even calm Jacqui can’t camouflage her panic.  Urgently, she asks, “When are you going to ask for an oxygen cylinder?  When’s the last time you took that… uh… you know… that ‘medicine?’”

“No.  I … can’t have … bottled … oxygen.  I’m … too … carbon … dio…xide retentive.  That would … kill me.”

Much to my surprise, I squeeze out a mocking chuckle. “You just … can’t … say it.  ‘Ordine.’  It scares … you … We … both know … it’s just … liquid ‘Morphine.’ I took it … 5 hours …ago.”

Unreal!  I’m zapped by another tsunami bout of breathlessness! 

Jacqui shoves a pre-measured dose of ‘Ordine’ up to my quivering lips. 

That ‘Ordine’ is just like some rodeo rider.  It jumps on my bucking bulls – my bouts of breathlessness; knocking them out. 

That Ordine has kicked it real fast.  I better speed-talk while I can. 

“I’m 55 there.  I was living in nomad’s land — Outback, Queensland. Only 300 people lived in town. 1500 others lived on 90,000+ acre cattle stations. That’s a photo of me and some ladies from one of my fitness classes. They talked me into holding my ‘Ever Fit Classes’ at noon… In 104 degrees F heat. I miss looking that fit.  Heck. I did 5 classes, back-to-back, every weekday.” 

“I’m 50 there. I lived on my 25 acres in the lush Gold Coast hinterland.  Brush-cutting, chopping wood… caring for my quarter-acre vegetable patch and teaching 5 fitness classes, back-to-back, every weekday, at the surf lifesaving club… really kept me fit as a fiddle.”

Jacqui chuckles. “What are you doing with all that cattle?”

I can’t help but chuckle.  And, that throws me into another bout of breathlessness. 

Calm Jacqui, softly says, “Take your time.  I’m in no hurry.”

It seems the more I take ‘Ordine’ the less it helps me.  Like, right now.  It’s already deserting me.

  “That’s … when I was 59.  I … was living … in a town … of only 100 … That’s me perched on the rails above all that cattle. I … was drafting or separating … calves … from their moms. It was time to ‘wean them.’ That’s why graziers call them … ‘Weaners.’ Their mooing … lulled me … to sleep, every night.”

“Hey, you’re quite the dapper-dresser here.  How come?”

 “I was 39.  I was … a speech pathologist … in a hospital … and a … community health center.  By then … I had been a speech pathologist … for 17 years. Australia gave me … a chance to help … some really unusual cases.  Like, kids … with ‘Angle- man’s Syndrome.’ There were only 50 … reported cases … worldwide. Like Dolphins, they just played instead of slept.  I mostly helped … Stroke patients.”

            Jacqui’s whole face smiles.  “And that’s a photo of you with your daughter.”

I swipe a teardrop from my cheek. “That’s the last time … She … Saw me … healthy. I was 60 …. She…. was 34.  Wow… Almost 3 years ago.”

“I’ll… stop… talking.  You … have others … to see.  Heck. I can … barely move around my … home.  No wonder … it stays … so clean.  Just … wash my hair … please.”

But, as always, Jacqui does exactly as she wants … She cleans the bathroom and kitchen… And, she vacuums.  It’s amazing how the government only charges me $40/month for her to clean my house and wash my hair, twice weekly.

As I say goodbye to Jacqui, I wonder will I see her again; or will the Grim Reaper’s toying with me, finally kill me?

Let’s go back 731 days ago… back to ‘the beginning’ of my End Stage lung illness.

It’s Tuesday, November 12, 2013.  I do my daily routine: 30 minutes of prayer and meditation, an hour of resistant exercises, a 30-minute jog and then, 20 minutes of Yoga.  I spend the day writing a new short story.

No wonder I hit the hay at 7.30PM.

 I have another one of my favorite dreams… It’s of my 18-day-old grandson, Jackson… but in the dream he’s 21-months-old.  We’re playing Marco Polo in a pool.   

Then, from out of nowhere, I can’t catch my breath.  I catapult to sitting.  My digital clock shows “2.05AM.”  

In a split second, I‘m gasping at Remington speed.  

Panic shoves calmness and common sense from my head.  I’ve been gasping for 10 minutes?  I’m going to die! 

My poor cats’ meows become screams for help.  I wish I could scream.

I collapse, flat on my back.  My soul’s so gently talking to me… “It’s OK.  It’ll be nice to be with your parents and sister, again.”

My mind shouts, “How dare you talk her into giving up!”

Fear becomes the referee.  Thank God, it orders me, “Get into take flight mode, now!”  

Somehow, I dash to my neighbor’s apartment. It’s only about 3 yards away. I’m clawing and pounding on his front door.  In seconds flat, he’s holding me; and with his free hand, he dials ‘OOO.’

Once in Emergency, I’m frantically pantomiming, “Put me on oxygen!” 

I clutch the oxygen mask.  Again, I’m panicking.  I pantomime, “Turn it up!” 

In the most annoying calm and non-negotiable tone, the nurse says, “We can’t increase the oxygen flow.  You’re probably carbon dioxide retentive.  You could die.” 

Weakness and fright paralyze me as I lay helplessly back down, flat on my back, on this gurney.  Then, an orderly’s driving me to all sorts of places.  I get several blood tests, an X-ray and an EKG. 

When I’m finally rolled onto a proper hospital bed, I notice I’m in Isolation.  What a dungeon – there aren’t any windows and the door is kept shut. 

I have never felt this alone in my life. And that is so strange.  I’ve been basically living on my own most of my adult life.  I’ve always figured, the only way I have ever felt lonely was when I was in a lousy relationship.  But, now…  Loneliness is relentlessly choking me; and it isn’t letting up. It’s a night filled with breathless bouts around the clock.  I’m afraid to close my eyes… Afraid I might die… Well, it takes this night’s brush with death, for me to learn I only feel lonely if I am near death. How interesting… 

I’m told that some unidentifiable viral chest infection has permanently left me with only 25% useful lungs.

After 8 days, another neighbor drives me home. 

Ross parks next to my letterbox.  Just outside my car door, he sets up this wheelie walker. 

As he tries to put my hands on it, my glare burns holes in him. Sheer stubbornness propels me to power-shuffle.  Amazingly, I shuffle the 20 yards to my front door.  

Ross is right on my heels, ready to catch me. 

With my next string of scary gasps, he grabs me around my waist.  “My God!  Did you eat anything while in the hospital?”

I ignore him.  But, in my mind, I know that I lost 8 pounds, in just those 8 days.

I plop myself on my couch.  I know Ross is only trying to show he cares; but… He plants himself in a chair; and leans nearly nose-to-nose to me.

His facial expression drips with syrupy sympathy. He whispers, as if we’re at my funeral. “You’ve always been a petite woman; but… How are you going to get better?  You can’t shower or dress yourself; let alone cook!”

I snap.  “Hey! I’ve been taking care of myself, on my own, for at least 90% of my adult life!  From the way you’re talking, I may as well pack-in having a hope in Hell!”

For long minutes, he’s lost for words.  Then, consumed with shame, he whispers. “I forgot how the hospital arranged for in-home care.  Just maybe…” His voice cracks.  “Just maybe you’ll get better.”

After 8 days, in the hospital, with its constant interruptions… I’m hanging to be on my own… Well, just me and my two cats.

Thank God Ross is perceptive and he leaves.

 There’s one thing I just have to do, right away. I’ve just got to hide that despicable wheelie walker.  A beach towel does the trick. 

            I shuffle my way into my kitchen, using my furniture as crutches. 

            It takes me a dozen tries to open a flip-top can of chicken noodle soup. I’ve never been like ‘this’ — extremely weak.  And, the bouts of breathlessness, every few minutes, exacerbates my frailty. Managing only a few spoons of soup hardly warrants my grand can-opening feat.  I burst into gut-wrenching sobbing.  There I sit, slumped-over… Just like a fighter, down-for-the-count.  

            Even after 4 hours of blankly staring into space, I’m still just as confused and frightened. 

I head off to bed at the ridiculously early hour of 7PM. 

I smile at my queen size bed like it’s a long-lost friend.  I lie on my stomach, like I’ve done all my life.  Within seconds, I’m struggling to breathe.  Panicked, I flip over onto my back.  Now, I skip sobbing.  I’m down right wailing.   From the corner of my mind, pops up a tiny light of hope.  My mind grabs it. I tell myself, crying won’t fix me.  So, I just have to buck-up.

It’s like that tiny surge of hope lulls me into several hours of most-needed deep sleep. 

Then, a nightmare wakes me.  And, how eerie is this?  It wakes me just as my clock shines “2.00AM.”  That’s just 5 minutes before 75% of my lungs died, 8 days ago.    And what a vivid nightmare — Freddy Krueger’s running a movie projector.  He’s cackling with evil delight.  I’m the main star in this movie entitled, ‘2.05AM, Wednesday, November 13, 2013.’

Freddy chases me out of my bedroom. I make a bee-line to my 2-seater couch.  Lying on my back, I just fit. After hours of tossing and turning, I surrender.  I need a lamp ‘on’ or I won’t sleep.  Little do I know that I’ll need that lamp ‘on,’ all night long,  every night, for the next 3 months.

Okay! I’ve been home 3 days… enough lazing-around. Today, I start my ‘Fix My Lungs Programs.’  I try to power walk the perimeter of the huge lawn area, out the back. Okay, so it’s more like a ‘power shuffle.’ 

Today I’ve been home 30 days. I see my GP. I make myself march into his office. Shuffling would show I’m defeated.    

Instead, of looking at me, he’s talking to his pen as he rolls it back-and-forth on his desk.

As I brag about my ‘Fix My Lungs Program,’ pity plasters every inch of his face.  He’s back to talking to his pen. “That may slightly decrease your breathlessness. I admire your determination to uh…”

Then, stone-seriousness steels his face. He looks directly into my eyes. His voice could freeze the sun. “Maybe it was a form of pneumonia.  It destroyed 75% of your lungs.  Nothing will fix that.  You will have one lung infection after another for what’s left of your life. It’s hard to say how long you’ll live… Maybe months… The only two things you can do to somewhat postpone the inevitable is to keep-up with flu and pneumonia inoculations.”

I can tell that he can’t bear to look at me.  You’d think after all his years as a doctor he’d be used patients dying. He quickly scribbles two prescriptions. “Stay on your regime of short-term and long-term bronchodilators… ‘Atrovent’ and ‘Spiriva.’”

Saying that I walk out of his office with a “heavy heart,” is like saying “dying’s just a very temporary mood-killer.”

I just can’t go straight home because it’s nothing but an over-sized coffin. I cross the street to Bothwell’s park; and I sit under my favorite tree.  I cloud-gaze.  And just for a split second, I forget I’m near-death.  As a kid, I indulged in cloud-gazing every sunset.  But, now, at 62… There isn’t a cloud that can push-away my sadness — My parents died at 67. My sister died at 62. I’m next. I’m 62.  I always figured I’d live to be 90.

Well!  It’s November 13, 2014.  These past 365 days have flown by.  That’s good because I’m still alive!  That’s bad because I’m closer to ‘D-Day’ – dying. I still haven’t taken the beach towel off that wretched wheelie walker. And, I haven’t had any ‘Ordine’ (liquid Morphine) for 8 months. I’ve gotten pretty good at doing that ‘drill’ – exhale first, etc. I’ve had to reduce my 20 minute showers 10 minutes, with the steam making me breathless.  And, I have surrendered to the shower seat.  And, you bet I’m thankful that the government only charges me $50/year to borrow the hospital bed, shower seat and that horrible wheelie walker.

Just a few weeks ago, I had to give up my ‘power shuffle’ around the big lawn. I’ve lost at least 50% of my muscle mass. 

I weigh 85 pounds.  My normal weight has always been about 110 pounds.  I definitely do not have even a pinch-full of love handles.   My stomach is extremely concave…So, I haven’t seen my belly button in months.  I eat 7 meals-a-day. I blend this super high calorie drink: 3 scoops of high protein and fat ‘Sustagen,’ 3 scoops of vanilla ice cream, 3 tablespoons canned fruit in thick syrup, ¼ cup powdered almonds and ½ cup full cream milk.  Yet, I’m more than just skinny as a rake.

Now, it’s November 2015; and I’ve been near-death for 730 days. By some miracle, my state of health is in a holding pattern… Meaning, it’s no worse. 

I stick to having 7 meals-a-day.  I’ve upped having those blended drinks to 3 times-a-day. Yet, over these 730 days I’ve only gained 8 pounds. I weigh 93 pounds. I’m still 17 pounds underweight.   

One night, just as I settle into watching the 6.00 News, another tsunami of breathlessness clobbers me. 

Now, after 740 days of thousands of breathless attacks, I no longer panic.  Calm as all get out, I call ‘000.’ An advisory nurse and I discuss my condition. I’m told to take an ambulance to the hospital.

Because the symptoms mirror a heart attack, I’m seen immediately.  A blood test, an EKG and even an Angiogram show that I haven’t had a heart attack.

Because I’m in the Cardio Ward, I’m seen by a cardiologist.  And, I must say… what a tall, strapping and handsome man he is, too. 

He gives me the run-down – my heart’s absolutely fine.  I’ve just had my hundredth lung exacerbation episode.   

No sooner does he leave my room, when he U-turns.

 “Outside of you being as skinny as a rake…”

He slowly strokes his chin.  “…You look fairly healthy, despite only having 25% lungs left.” 

He stares at me for long minutes. Then, much to my joy (and surprise) his eyes light up like a pair of Christmas trees.  And, he’s so excited!  “Why haven’t you considered getting new lungs?”

Well!  You could knock me over with a feather! 

I feel this instant warmth filling every crevice of my heart and mind. It’s ‘hope,’ which, has been AWOL these last 748 days.

For the next 20 minutes, that wonderful doctor fills-me-in-on the transplant process.

I’m as bubbly as a freshly poured glass of champagne. 

Of course, the minute I get home, I’m online, searching everything about lung transplants.  The stats aren’t great.  85% of lung recipients survive the first year. 65% are still alive after the 5th year. 

The more I read, the faster that ‘hope’ heads for the hills.

Just before I fall asleep, I treat myself to reliving those hope-filled 20 minutes.  Hey, with my life quickly waning, you bet I grab any chance to relive ‘hope.’

But, today’s November 28, 2015 and… In 25 more sleeps, I’ll be hugging my daughter, her husband and my grandson!

They live just a 20-minutes’ drive away from that beach that fills my dreams.

 From Tasmania to Queensland, it’s a 3-hour flight.

I just can’t chance having bouts of breathlessness aboard the plane.  So, I pre-arrange for wheelchair support at all three airports – Hobart, Melbourne and Gold Coast. 

It’s now 773 days that I’ve been so sick.

Even though I have to leave my house in about an hour; I re-open my suitcase for the 5th time.  I just have to make sure my ‘bag of tricks’ is safely tucked-away. I had spent hours searching my brain.  At last, I found something Jackson and I can do, without me crumbling in a pile of breathlessness.  As, I shut my suitcase that final time, a tear trickles down my cheek.  I know I won’t be able to get down on all fours and play with him… like my mom did with Brie.

The second Jackson squeals “Granny G,” goose bumps pop up all over me.  How I have dreamt of this all these 773 miserable days.

The four of us chatter and laugh, filling every corner of their little house… and, every corner of my heart.  

I’m the first to wake up my second day with them.  I skip my first coffee… I have something more important to do.  I speed-shuffle to their coffee table, laying out the craft materials. 

We’re going to make a ginormous Christmas card for each pair of adults — Brie-Jason and Nana-Gramps (Jason’s parents).  Because Jackson is just 2-years-old, I’ve kept it very simple.  He’ll tear glittery papers and glue them to the big cards.  He’ll add some ribbons that I’ve pre-cut.

The minute we start, I’m a hostage to a whopping tsunami breathless bout.  I just cannot stop it, no matter what I do.  Those are the longest 10 minutes of my life. Little 2-year-old Jackson turns all his attention to Shaun the Sheep cartoons.  His giggles and laughing aren’t enough to dam my tears.

Even a simple craft is too hard for my lungs.  I feel just like a defeated boxer with my hope flat on its face… In an unquestionable ‘KO.’ 

It takes me several tries to lift myself up from sitting beside the coffee table. I just can’t let Brie or Jackson see my tear-drenched face.  In less than a minute, I manage to speed-shuffle a good 2 yards, into the guestroom.  I throw myself on the bed, burying my face into a pillow… Muting my life’s most sorrow-filled sobbing.

The rest of the day’s deafeningly quiet.  We’re all in a state of sad shock, that I couldn’t do even the simplest craft activity, with Jackson.

But, then, today, on my third day with them, Brie comes up with a fresh idea.  Instead of walking to their local park, she drives us.  She picks a spot where I can sit; and in a few shuffles, I can stand and push Jackson on the swing.

 

Brie’s a very talented hobbyist photographer.  She takes this amazing photo – of my skeleton hands with their bulging, oxygen-starved veins.  She entitles it ‘Beauty in Frailty.’

 

 

Our ten days have flown so fast.  Today’s my last day with them. 

I decide that we just can’t ignore these two elephants in the room.  First, there’s the fact that my incurable illness permanently bans me from playing with my grandson.  And, then there’s the second fact – I can die without any warning.  

            I just have to have a discussion with Brie. I have to try to help her be less afraid about my fate.            

The first time, it’s just Brie and me, I jump straight in — “Brie, I have to make sure that you know that I’m not afraid of dying.  I have to make sure that you know that I will accept it…” 

            Oh, no!  Now I’ve done it.  She’s immediately sobbing.  

            She drops her head. She desperately waves her hands… ordering me to drop the subject.

            Today, is our last park visit.

Brie snuggles-into me as we sit on a bench.  She gives my hand the most love-filled squeeze.  Her long inhale quivers.  I know her so well.  She’s desperately trying to work up some courage.  “Mom, it’s awful, for you, that you can’t play with Jackson.”

Two tears trickle down her cheek.  I look deep into her baby blue eyes.  Oh, no.  Now, they’re swimming in tears.  I can’t bear this.  “Brie, please.  You don’t have to talk about this…”

She squeezes my hand. She’s frantically shaking her head.  She coughs-away the tears dammed in her throat. “No, mom!  You have to listen!  I know you want to recount how wonderfully fulfilling your life has been… As a way to reassure me… that you’re alright about having to die.” 

            With her next tight hand squeeze, our eyes meet.  We’re both seeing right into each other’s soul. I swear, I also see my baby-blue-eyed little girl when she was Jackson’s age.  And, as she always does… She surprises me.  With steeled-courage, she says, “If you are happy about dying; I will try my best to not be sad.”

            “Brie, being here with you, Jason and Jackson has really made everything crystal clear to me.  All my life, I’ve always told myself that there isn’t anything I can’t do.  Every problem is just a case of mind-over-matter.”

I find the strength to vice-grip her hand.  I look her straight in the eyes.  “I am not going to let this lung disease take away my life time of can-do attitude.  My parents… all my ancestors would kick my ass if I dared do that.  So…”

             “I’ve decided to do everything in my power, to get on The Lung Waiting List.” 

            For the longest split second, we could hear a pin drop.  

Then, Brie’s laughing, to beat the band.  “That’s what I want to hear!”  We seal this ‘vow’ with the tightest-ever bear hug.

            With that decision done and dusted, I am more than ready to head home.

            Just into the final hour of my flight, a bout of breathlessness hits me. In record time, an air hostess puts an oxygen mask on my face.  I pat the cylinder like it’s my hero and best friend.  

            Once we land, an ambulance takes me to the hospital.

            I only stay for 2 nights.  But, because I have ‘a plan’ to save my life… This exacerbation episode’s just water off a duck’s tail.

            Spurred by sheer determination, I make myself march into the Lung Transplant Team meeting.   

Surely, the respiratory specialist will have writer’s cramp after signing 17 individual blood test forms and 9 individual referrals for medical tests.  Again, I’m so thankful that the government pays for all of that.

A handful of blood tests will build a ‘profile’ to use in finding matching lungs for me. That profile includes my blood type, tissue type and antigen markers.

I’m a little disappointed because I’m blood type O; which is ‘the universal type.’   I can give my blood to all other blood types. But, my donor has to also be a type O.  Things would be great if I was a type AB, A or B because then my donor could be any of those types.      

            Other blood tests include: CEA (checks for cancer), CMVIgM (checks for a common virus), CRP (checks for infections) and those that check for any sexually transmitted diseases… And of course, there are blood tests checking for HIV, Hepatitis, Chicken Pox, Shingles and any form thyroid problems.      

            And, as far as those 9 medical tests…

There are chest X-rays and CT scans to get a picture of my heart and lungs and the size of my lungs.   There are the Pulmonary Function Tests.  A clamp is placed on my nose and I breathe into a spirometer.  This measures the capacity and the function of my lungs.  There’s also this 2-hour pulmonary test; and it determines how my lungs process both oxygen and carbon dioxide.

An Electrocardiogram evaluates my heart’s rhythm; as a way to identify any potential problems before the transplant.  A Doppler Ultrasound is done, to check my blood flow across my heart’s valves.

I get a Pap smear and Mammogram done – to rule out any diseases.  If I was a guy, I’d get a prostrate check.

All these tests determine if I have health issues that could rule me-out as a double lung transplant recipient.  On the positive side, those tests indicate if I have any health issues that can be remedied…and then, I can go on The Lung Waiting List.

With all that done, it’s now late January 2016 – 813 days since I first fell ill.

You can bet that I’m nervous about my Tuesday, February 9, 2016 meeting with the Tasmanian Lung Transplant Team.

 What if the test results indicate I am NOT a good candidate for The Lung Waiting List?

A thought, sparkling with optimism, pops into my head. Brie was born on a Tuesday.  My appointment’s on a Tuesday. That’s got to be a good omen. 

The last time I sat before a team of 5 experts was in 1983.  I was among the 300 speech pathologist applicants for this one San Francisco hospital job. But, let me tell you… Having to sit before this Tasmania Lung Transplant Team truly has me shaking in my boots. I am putting my hope, for a second chance at life, in their hands. The Team consists of 3 Alfred Hospital staff from Victoria and 2 Royal Hobart Hospital staff from Tasmania.  From The Alfred Hospital, there are Dr. Frazier, a respiratory specialist, Jenny Walker, a social worker and Dave Faulk, the Transplant Coordinator.  From the Royal Hobart Hospital there are Dr. Cranston, a respiratory specialist and
Sandra Hardy, a physiotherapist.

Dr. Cranston is the first to speak.  “All your medical test results meet the criteria for you to be placed on The Lung Transplant Waiting List.” 

Yes!  Now, those previous butterflies are really flapping around; but in celebration!

            “BUT, you must gain at least 26-1/2 pounds before we can put you on The Waiting List.  You must be your strongest to withstand this major operation, which can take from 6 to even 12 hours.”

My eyes are as round as saucers. Then, without saying a single word, I aim my unshakable confident smile right at each team member, one at a time. And, naturally, I add, with cockiness, “So, I’ll see you in 4 months and I’ll be 2 jean sizes bigger.”

Dr. Cranston gives me a very encouraging smile and says, “But, there are two more things you must do. You must be assessed by our respiratory physiotherapist, Sandra; and you must, without fail, participate in her twice weekly respiratory gym program.”

Now, it has been 828 days since I first fell sick. You bet I have heaps of questions when I see Dr. Jensen, who has been my respiratory specialist all these 828 days. He explains how I have quantitatively met the selection criteria for lung transplantation.  My results are as follows:

·         My FEV1 or ‘Forced Expiratory Volume in one second’ has remained at about 18%.  That means, I can only exhale about 18% in one second through the spirometer.  The criterion is 20% or less.

·         My BMI or ‘Base Mass Index’ or per cent of body fat is only about 13%.  The criterion is 17-19%.  But, the team is giving me time to reach this criterion.

·         My dyspnea or breathless grade is ‘3’ — that means I have to stop every 100 yards of walking to catch my breath. The criterion is at least ‘3’.

·         My exercise tolerance, as measured by ‘the Six Minute Walk Test’ shows that in that time span, I can only walk 164 yards… and that is exactly the criterion.

The last measurement Dr. Jensen tells me is my ‘BODE Score.’  For what seems like endless minutes, he is looking every, except at me.  “Your ‘BODE Score’ is ‘7’ and that means the likelihood of you surviving for a total of 4 years… counting back to when you first fell ill…”

He nervously clears his throat.  “So… subtracting these past 2 years… The likelihood of you surviving for another 2 years is…18%.”

Then, my bravado really shrinks to pea size.  In my panicked mind, I hear that evil Freddy Krueger cackling and saying over-and-over again, “You’ll be dead in 2 years or less!”

I feel numb from head-to-toe as I shuffle to my car.  

As soon as I get home, I make a list of things that will help me stay my healthiest until I get my two new lungs —      

·         No alcohol because that makes me breathless.

·         Stay clear of airborne irritants (i.e. cigarettes, perfumes, strong scented disinfectants, paint/varnish fumes, petrol fumes, etc.). 

·         Re-build my muscle mass by faithfully participating in the respiratory gym twice weekly.  Try to do two 15-minute exercise sessions/week, at home.

·         Be super vigilant in terms of infectious control; by washing and/or sanitizing my hands a zillion times-a-day. 

·         Get immunised against flus and pneumonia. 

·         Stay away from crowds. 

·         Reduce eating at restaurants to nearly nil to avoid any chance of bacterial infection.  Swear-off eating at any ‘Bain Maries’ – where cooked foods are stored above boiling water.

·         Implement infectious control standards for all my cooking.   

·         Stop soaking pots, cooking and eating utensils as that breeds bacteria.

·         Eat 3000-5000 calories per day (7 meals and 4 snacks every day). 

·         Get good sleep.

·         No more shelled seafood.

·         No more mushrooms.

·         No more runny-yoked fried eggs.

·         Limit processed meats.

·         No more egg products such as mayonnaise.

…And the last and equally important thing to do is –

·         USE THAT DESPICABLE WHEELIE WALKER to reduce my rapid calorie-burning.

 

Eight weeks later, the Transplant Team sends me to The Alfred Hospital for what is called ‘A Meet and Greet.’  For 4 days I meet all sorts of transplant team staff – surgeon, dietician, physiotherapist, pharmacist and educational nurses.  The airfare and accommodations for this are all paid by the Australian government.

There’s this one bit of information that the lung transplant surgeon shares that sends shivers all through my body.  “Considering nationwide Australia, there are an average of 16 to 24 deceased organ donors per million people.  By the end of 2015, there were 195 lung(s) transplants…  Of the deceased lung donors, maybe 40% of those lungs are usable for transplantation.”

My all-time favorite appointment is with The Alfred Hospital’s social worker, Jenny.  We immediately connect as if we’re sisters. She has been the hospital’s transplant social worker for 24 years. She tells me how I can have partially supported accommodation for my 3 months’ rehab, post-transplant.  She adds that the Australian government pays the entire $9000 bill.

I’m back home, in Tasmania…

The first 12 respiratory gym workouts were a really hard pill to swallow.  I mean, I used to do 100 reps on the leg press, with its weights set at my body weight, back then… which was 110 pounds. Now??  I can barely do 5 deep lunges, even without any weights.  And, I’, the only gym participant who needs a wheelie walker.  

By my 888th day of being ill, I can zip around using my wheelie walker, without taking a sit-break except for every 20th step.  Before starting at the gym, I had to have a sit-rest every 8 steps.  

And Halleluiah!  Instead of needing my spacer/puffer dozens of times-a-day, I only need them about 4 times-a-day.  The gym workouts are not curing me; but; they sure are helping me.

Nothing can wipe the confident smile off my face as I speedily wheelie-walker- strut myself into the next Lung Transplant Meeting, June 16, 2016. It is my 963rd day of being ill. By golly… I am still alive; despite thousands of tsunami bouts of breathlessness.

And nothing can wipe the congratulatory smiles off each team member’s face when I weigh-in at 98 pounds…12 pounds less than the 110 pounds I have weighed all my adult life; but I gained the required 26-1/2 pounds!

I cherish how puzzled Dr. Cranston looks. “How did you do that?  Most people with lung diseases can only gain half that, in 4 months.”

I let out a big, long sigh.  “Well, every morning I make this really long list of every food I must eat between 7AM and 7PM.  I set my mobile phone alarm clock for every 60 minutes – that’s my feeding times, throughout each day.  I still can’t believe how I shoved between 3000 – 5000 calories into me, every day.”

Dr. Cranston checks each team member’s face.  And, then… with one most emphatic and quirky dip of his head, he announces, “You’re on The Waiting List!”

I just know, that from all the way up in Heaven… Dad, Mom and Carol (and Jack, from faraway Pennsylvania) have just whispered to each team member – “Put Joanne on The Waiting List!” 

With each bold and bouncy step to my car, my smirk takes over my whole face.   I hold onto the 4 blood test forms for dear life.  They are, in a way, my winning tickets for a chance at a second life. And, so, until I get that magical call, “Your lungs are here,” I must get a blood test at the end of each passing month, monitoring my health. 

The next 360 days fly by without a hitch… I mean, I’m not hospitalized. 

Then, starting in early February 2017 or around my 1,173rd day of this illness; my health goes completely pear-shaped.

Between early February and right through March 2017, I feel stuck in a nightmarish revolving door.  I’m in-and-out of the hospital at least 6 times… And each time, for 4 very scary days.  My weight plummets all the way down to that scant 72 pounds, of 14 months ago.  I’m extremely frail. It has been 90 days since I participated in the respiratory gym.  And worst of all, to date, I have been on The Lung Waiting List 9 long months.

Okay, so that Freddy Krueger nightmare has vanished.  But, it’s replaced with a new… There’s this massively muscle-bulging, 20-foot Boa Constrictor. It winds around me… It squeezes the life out of my courage, logic and hope.

Being sick now a total of 1,173 days, I find myself honing-in-on the faces of healthy people.  I ever so slowly scan their sparkling eyes and rosy cheeks.  For those fleeting minutes, I feel I’m like that little girl outside the pet shop… “How much is that doggie in the window.”  I’m on the ‘outside of being alive,’ looking into that exclusive, ‘Healthy Peoples’ Club.’

Maureen, my 52-year-old gym buddy dies.  It takes a lot of spiritual energy to hoists my hope even a little.

At my next Transplant Team meeting, there aren’t any smiles.  Again, I feel I’m at my own funeral.  Empathy imbues Dr. Cranston’s face.  “You’ll need a prescription for ‘Ordine’ (that liquid Morphine)… Hopefully to spare you having those so frequent breathless attacks… It could help you feel more comfortable.”

I’m lost for words.  I get the feeling my ‘end’ is coming very soon. 

Now, my showers only last 5 minutes; and I only have enough energy to shower twice-a-week.  I’m resorting to tasteless commercially produced frozen meals.  It’s getting harder to chase-away this dreadful thought – Maybe I should get admitted into palliative care – yes, like a nursing home.

Then, on my 1,187th day of this ruthless illness… around 2AM, April 9, 2017…

 “Hello?”

“Is this Joanne Galliher?”

“Uh… Yes.”

“This is the Transplant Coordinator, at The Alfred.  There’s a good chance we’ve got a very good match for you.  You need to get here…”

“Huh?  Uh… (Yawn)… Okay.  Thank you.”  And, with that, I lay back down, to resume that splendid dream… the one where I’m a half marathon runner.

I catapult to sitting straight up in bed.  “There’s a good chance we’ve got a very good match for you…” types across my mind like ticker tape.

I scream, “Hey, she did say that!  Geez, I gotta THINK!  What did she say after that?”

My heart’s pounding outside my chest. 

I’m so annoyingly groggy.  Again, I have to talk right out loud to keep my focus.  “She said I need to get dressed…  Make sure I have everything I need in my backpack…’’

“Damn.  I bet the clothes in the backpack smell moldy, after being in there all these…” I count on my fingers.  “…All these long, horrible 10 months.” 

I fiercely shake my head.  “Oh, to Hell worrying about THAT.  What else did she say?”

I glance at my clock.  It’s now 2.31AM. 

“Uh… she said I’m not to eat or drink anything.”

It must take me 20 minutes to put on a sweatshirt and sweatpants. I still need to do the harder thing; that is, put on my socks and shoes.  With me hunched-over, I really get breathless. Geez, Mom… I wish you were here to dress me!

My phone rings.  In a flash, I remember what that woman had said.  “I’ll call you back in about 20 minutes with more information.”

“Hello,” I squeak.

“Joanne Galliher?”

“Yes.  Of course I’m ‘Joanne Galliher!’  After all, that’s who you phoned!”

Guilt hits me.  “I’m sorry for barking at you.  It’s just that…”

“Don’t worry.  Believe me, I know you’re just so excited and anxious. I’ve arranged your flight.  Do you have someone to drive you to the airport?”

“Uh… YES!  My neighbor!”

“Without panicking… or speeding, make your way to the airport…”
           

“You do know, of course, that it’s at least an hour’s drive from where I live…”

“Yes, I figured that in.  Don’t worry. Your flight isn’t for another 3 hours.”

Once I get through the Security Check-In, I settle back into my airport wheelchair, caring less that I have a 2-hour wait. Thankfulness takes up every inch of my mind and heart.  Again, the Australian government’s paying for my flight… It’s also paying for the double lung transplant surgery, rehab and the 3 months’ recovery accommodation.

            I check my mobile phone.  It’s April 9, 2017.  It’s SUNDAY!  Wow!  I was born on a SUNDAY, 65 years ago.  And now, I’m about to be BORN AGAIN!

            I swear my big smile could kick my ears right off my head. I’ve got this internal town crier – “Joanne’s getting new lungs!  Joanne’s getting new lungs!”  So, I leave a phone message with everyone I know.  

            Just as I’m about to turn off my phone, it rings.  “Hey, Mom!  Whoo hoo!  You are AWESOME!  I LOVE YOU,” shouts Brie.  Now, THAT’S my tranquilizer for the hour flight!         

            An airport passenger assistant wheels me to the taxi rank.  I love her unbridled enthusiasm as she tells the taxi driver, “This passenger will make your day!  She’s going to the hospital to get 2 new lungs!  So, drive very carefully!”

The second we’re pulled-up outside Emergency, I’m instantly a nervous wreck.  I have no idea where I’m supposed to go…  Then…     

Someone flings open my car door.  It’s Jenny, the Lung Transplant Team’s social worker!  It’s astounding how after, now 26 years working so closely with lung recipients, her face still lights up like an ever-burning halogen bulb… so thrilled that someone else is getting a second chance at life.

            She hands the driver a voucher to pay for the taxi ride.

            I climb into the wheelchair feeling I’m about to have my most thrilling life experience.  Jenny and I jabber-away and giggle, like a pair of school girls.

            She is with me right up until an orderly takes control of my wheelchair.  I’m off to get a lot of tests – blood, X-ray and more.     

Time flies so fast.  I can hardly believe I’ve been in The Alfred Hospital 3 hours.

            Jenny’s back.  “You’ve got a really good ‘match.’ So…”

            She squeezes my hand, winks and says, “See you with your new lungs, soon.” 

            Wow.  From out of nowhere, Fear stabs me.  I, ever so gingerly, lay flat on my back.  There’s this faceless orderly driving me. The further he pushes me, the darker everything seems to get. It must be from that pill they gave me.

The corridors leading to the operating room are such a scary maze.  Then, I get this really ghastly and stupid thought — Now, I know just how John Coffey felt on his final walk to his execution, in that movie, ‘The Green Mile.’   

            Panic zaps all of me. Suddenly, I’m yelling at the orderly. “STOP!  I mean…”

I gulp and take in 3 very slow quivering breaths.  I soften my voice.  “I mean, would you please stop, just before the doors to the operating room?  I want to close my eyes. I don’t want to see any of the operating room… ‘Ignorance is bliss;’ if you know what I mean.”

            His gentle pat on my shoulder says a lot.  And my sweaty hand pat, on his hand, is my heartfelt “Thank you.”

Just as the anesthesiologist is about to give me instructions, a most-comforting thought pops up in my mind… Hi Mom, Dad, Carol and Jack!  I know… you’re each with me.

Then, who knows how much time passes.  Maybe, even days…

            Someone’s talking right into my ear.  “Joanne.  Come on.  Open your eyes.  Time to wake up.”

            Everything’s so dark.  It’s like I’m on that Disneyland ride, ‘The Blue Bayou.’  Everywhere that I look up, it’s like an endless black and purple sky.  I think I also see wispy clouds and trillions of stars.  But…

            Now, my mind’s really freaking out.  I can’t open my eyes!  What’s going on? Am I still asleep?  Am I dreaming? This is freaking me out! 

            “Joanne.  You hear me.  I know you hear me. Come on.  You can do this… Wake up.”

            I listen very intently. 

Then, I don’t hear that woman anymore.  Whew. Thank God.  I really think she’s an alien from outer space… Holy smokes! Have I been abducted by aliens?

            Now, my mind’s really screaming.  Damn it!  Open your eyes right now!

            I think my eyes are open.  I can’t tell.

            All I see is more of that ‘Blue Bayou’ kind of sky.  But, now, I can hear murmuring voices and really strange beeping sounds.

            I think I’m shaking my head.  I can’t tell.

            There’s that strange lady again.  She’s talking into my ear as if it’s a mic.   “Excellent!  It’s wonderful to see you wide awake!  You’ve been in induced coma, on a ventilator for 3 days.”

            Thank God the penny drops.  I’m in the ICU!  I’ve had a double lung transplant!

            A smile fills my whole face.  I close my eyes.  I start to take in what will be the biggest… the deepest breath of air…

            Unbeknown to me, that nurse is watching me.  In seconds flat, she’s at the side of my bed.  “I’ve seen so many lung recipients taking their very first deep breath… It is such a miracle! I love watching that every time.”

Well, it has been 1,190 days since I had the pleasure of inhaling and exhaling over-and-over again.  I almost hyperventilate. 

I’m sure I have a Cheshire grin on my face right up until I doze off.

I guess it’s many hours later.  My talking in my sleep jolts me awake.  “Hey everybody!  I can breathe!  I can BREATHE!”

“Hey, you!  You’re nearly shouting the ICU walls down,” scolds Jenny (the social worker)… Adding a string of chuckles.  

            I tuck my chin into my chest, pretending to be coy. Then, I whisper. “I can breathe, Jenny!”

            But, she’s no longer smiling.  Instead, her attention’s somewhere else.  That’s when I notice these 3 doctors, congregated at the foot of my bed.    

            “I’m Dr. Wood and my colleagues and I aren’t real happy with your oxygen saturation levels.  We thought that after 3 days in induced coma, it was safe to remove all those tubes; and take you off the ventilator.  But…”

            My voice shrills.  “Has my body rejected the two lungs, already?” 

            He and the other 2 doctors quickly shake their heads. Then, he says “Oh, absolutely not.  It’s just that we think you need to put back on the ventilator. Because you were so frail and sick…”

            My eyes are as big as saucers.  “Do you mean I have to be operated on, again?”

            Then, he ever-so benignly says, “We’ll just have to do a tracheostomy.”

            “You need to put a HOLE in my throat?”            

He starts to explain the procedure; but, I’m fiercely shaking my head.  “I don’t want to know HOW… Just do it.”

…       

 It’s my 4th day after my double lung transplant.

Here’s a new voice.  “No!  Joanne!  Lay back down!”

I try to talk; but I can’t.  Oh, how I wish I could scream, “I can’t LAY DOWN!  I’m burning-up!  I need a cool shower!”

I figure it out.  She’s a nurse. 

She dashes out of my room. She returns with two male nurses.  It takes the three of them to pin me to the bed.

But, I break free from their grips and pantomime that I‘m very hot.

That nurse quickly puts cold compresses on my forehead and chest.  But, I’m still on fire.  Ever so calmly she says, “It’s a common reaction to the anti-rejection medications… Feeling as if on fire.  It will pass.” 

I try to sleep on-and-off.  For at least the last 30 hours I bet I’ve been running the poor nurses off their feet; giving me cold compresses, every hour.     

It’s my 16th day, in the ICU.  I feel so jealous of the other transplant patients.  They only stay in the ICU 3 days.

But, one thing good happens today.  I get 3 visitors.  It’s Bill, the physiotherapist and 2 student physiotherapists.  “Okay,” says Bill. “Time to get your pins moving again!”

What a production!

First the nurse disconnects my catheter.  Then, much to my surprise, I’m unhooked from the ventilator. 

What a shock.  I manage to sit up.  I manage to swing my legs off the bed.  But, the second I’m on my feet, I collapse like a ragdoll.  I had no idea I would lose this much muscle just by being in the ICU 16 days. 

Once the trio leaves, unswerving determination takes over.  I spend the rest of today, practicing getting off the bed and standing.  For motivation, I’m singing that song – “Everybody’s doing the locomotion…” 

Bill surprises me with a second visit.  “Hey!  I’ve watched you without you knowing it.  Way to go!  You’re going to kick lots of goals, Joanne!”

            Well, at last, after 21 days in the ICU, I’m allowed to drink… Well… SIP water.  It’s really hard to sip like some Hummingbird when you’re dying of thirst.  And, I’m yearning for anything that’s even slightly chewable… even just porridge.  But, all these 21 days, I’ve only been given Jell-O, 3 times-a-day.

I haven’t been able to utter a single word all these 21 days.  I try writing messages; but, another medication reaction kicks-in… My hands and fingers are continually trembling.  

            Here it is my 25th day since my transplant. 

“Hey, Joey!  It’s ‘moving day,’” says Bill with delicious exuberance.

            He leans in closer to my beaming face.  “And I come bearing a gift!”

            He thrusts this small tube-like thing an inch off my nose. 

            He gently screws it into my trach.  

            “Go for it! I’m dying to hear you speak!”

            “G’Day, Bill!  How ya doin’?” 

            And, we’re chatting and laughing to beat the band.

 

As of today, it’s now my 32nd day since my transplant.   One of the most chipper nurses is my evening nurse.  Chloe’s always bright-eyed and full of smiles.  But, not so tonight.  I’ve never seen her this serious.

 “The doctors want you to be unhooked from the ventilator for the next 12 hours.”

“Huh?  They want me to breathe on my own while I’m dead asleep?  B-B-But what if I can’t breathe?  I-I I could die and no one would know!”

Chloe’s smile’s back. Thank goodness. “Joanne, every time we take your Ops — your blood pressure, your oxygen saturations — What does it show for your saturations?  Go on.  Tell me.”

I mutter, “100%.”

“Yes!  Precisely!  Your two lungs are A-1.  They won’t let you down.  And every time you go for your strolls, you’re off the ventilator – right?”

She squeezes my hand.  “You’ve got to start believing that your new lungs will keep you alive.”

Well, of course, it takes me at least 2 hours to fall asleep.

Then, around midnight, Chloe comes back and does my Ops, again.  “See?  You’ve been breathing on your own; without the ventilator…”

She checks her watch.  “…for 5-1/2 hours.”

Just 5 minutes after she leaves, I feel like my heart’s pounding in my head.  I’m as breathless as I was before I had the transplant.

Within seconds of pushing my call button, Chloe’s beside my bed.  “Okay.  All you need to think about now is…”  She slowly inhales and then as slowly exhales.  “All you need to do is make yourself relax.”

Tears stream down my cheeks; but I manage a nod. 

She’s so calm. “I’ll hook you up to the oxygen.  I have to get the doctor.” 

I grab her arm and pantomime “Turn up the oxygen.”

With double the calmness, she says, “We can’t chance you being carbon dioxide retentive.  Joanne…”  Her eyes penetrate mine.  “You’ve got this – honestly, you do.”

In record time, there are three doctors and Chloe in somber consultation, at the foot of my bed.  I wish I could hear what they’re saying; but, it’s as if my hearing has faded… Maybe, because I’m starved for oxygen?

Then, one of the doctors stands at my bedside. “Joanne, your blood pressure… your heart rate… have plummeted to dangerously very low. We’ll put you on a special IV to quickly hydrate you.”

Within an hour, that horrible breathlessness disappears. As a precaution, I’m put back on the ventilator.

Chloe has had to pull a double shift.  It’s astounding how she just goes and goes like some ‘Ever Ready’ battery.

She looks at me inquisitively.  “Not to alarm you… But, you’ve been clasping your left hand all night, as you slept.  Are you feeling any numbness?”

“No.” I just have to chuckle. “It’s just this thing I started doing about 6 years ago.  My sister died and so since then, well… and with Mom and Dad gone too… I was on my own.  So, whenever scary stuff happens, I… Well, ‘I hold my own hands.’ That makes me feel like Mom, Dad and my sister, Carol; and my daughter, Brie… and dear Jack are holding them.”

            And, for the next 7 days, I’m completely incontinent… wetting my bed every hour on the hour. Even though the nurses are happy to change my diapers, embarrassment drives me to I do that myself.    

            Now, to-date, I have seen at least 4 lung transplant patients discharged.  They didn’t have any complications.  And, so on their 13th day post-transplant, they moved into their self-contained apartments, with their care person (i.e. spouse, family member or friend).  With this my 39th day since my transplant, my acute care or hospital stay has been well-over double theirs.

But, on the brighter side… Every day, I get disconnected from the ventilator for an hour, now-and-then. I put on an infectious-control face mask and go for my wheelie-walker 2 laps around the ward.  I love the nurses’ encouragement.  “You’re sure kickin’ goals!”  “You’re getting speedier every day!”

Now, after 47 days since the transplant, something absolutely monumental is going to happen.  The trach is being removed, since I’ve been off the ventilator for 8 straight days and nights. 

Six student nurses crowd around my bed.  I feel like a circus act; but, it’s nice to be part of their training.

Chloe says, “Okay, Joanne, take in a big breath of air.  Hold it… Now, exhale as hard and as long as you can!”

Without a hint of pain, out comes the trach. Everyone’s clapping.

The nurses are so well-wishing.  A few of them crowd around my bed just to watch me eat my first real meal, after 41 straight days of having nothing but Jell-O three times-a-day.

The pharmacist visits me.  Now that I’m no longer on nasogastric feed (tubing down my nose, to my stomach), I need to start orally taking all my medications. 

Fear instantly strikes me as she shows me the 4 full pages of my required medications.  And, I instantly panic when she tells me that she has come to teach me how to load my weeks’ medication container. It’s called a ‘dosette’ and it is a huge 7 X 10 inches.  I can barely pay attention because I’m fixated on the amount of tablets I will be taking.  I lost count at 25, just for the morning tablets.  I lost count at 15, just for the evening tablets.  My mind’s freaked – If I make a mistake laying out my medication my body could reject my two new lungs… I could die!

Just as she’s about to leave, she pats my trembling hand.  “Don’t worry.  You won’t have to take this many, for life.  Over time, it will more than decrease by half.” 

Nonetheless, I can’t help but lay the longest ever minutes, paralyzed with fear.

Okay, now as of today, I’ve been in acute care 3-1/2 times longer than most lung transplant patients.  Yep – today marks 48 days since my double lung transplant.

I am feeling so sleepy.  I can barely keep my eyes open long enough to take my 15 evening tablets. 

After today’s really good hour-stint with the physiotherapist, you bet I can’t wait to close my eyes; and enjoy a good night’s sleep.

After years of lung problems, I can only fall asleep with me lying on my back.  So, down I go…

All my previous pleasant drowsiness instantly vanishes.  The whole back side of me – the back of my head, my shoulder blades, my butt, my thighs and heels are instantly on fire.  I try to lay on my side; but, that sends unbearable shooting pains all through my chest. 

I leap from my bed; and shuffle my way to the nurses’ station.  By now I can’t stop my tears. 

A nurse helps me back to my room.  I’m not game to lay down. 

After consulting, we decide that I might be allergic to the rubber mattress.  But, even after piling 3 blankets on it, I’m still on fire.

For the next 7 nights, my whole back side’s on fire, for at least 6 hours after I take my evening medications.  I’m only getting about 4 hours of sleep each night.

Thank God the Respiratory Registrar suggests that I may be having a reaction to the Tacrolimus medication. She prescribes some over-the-counter antihistamine.  At last, that on-fire sensation vanishes, just 6 days shy of what could be my ‘Diamond Anniversary’ of being in the hospital…60 days.

Okay, now I’ve been hospitalized 4-1/2 times longer than the other lung transplant patients.

But, hey… I’m being discharged today!

The nurse who helps me with my last hospital shower has shock-horror written all across her face.  “Joanne, you’re so skinny.”

I hang my head.  “Yeah, I know.”  I cast my eyes down my chest and feel each severely protruding rib. My skeleton-like chest looks like a Christmas tree stripped of its needles.  Then, I look straight down.  I can’t see my stomach because it is severely concave. Stupid me.  I weighed myself yesterday.  I’m 72 pounds.

I study that nurse, from head-to-toe.  “I bet you weigh about 110 pounds.  That’s what I’ve always weighed since I was 20.  But, hey… I heard there’s a fantastic chef at the supportive living place where I’ll stay for the next 3 months.  I’ve seen its website.  There’s only 33 residents.  I’ll have my own room and bathroom.  I’ll have 3 chef-cooked meals-a-day; and someone will clean my room and do my laundry once-a-week!  It’s unreal how the Australian government will pay the full $9000 bill.”

With every day feeling like that movie – ‘Groundhog Day,’ I’m ecstatic that I’ll at last, start the 12 weeks of rehab.  Every Monday, Wednesday and Friday I’ll attend ‘Clinic’ and an hour of respiratory physiotherapy. 

‘Clinic’ means I’ll be seen by respiratory specialists, a dietician and a pharmacist – all to make sure I’m in optimum good health.  The respiratory workouts are 100% on resistant equipment – i.e. treadmill, stationary bike, leg press, pull downs, etc.  At the end of the 12 weeks, I must be able to walk what now seems impossibly too far… 547 yards, in ‘The Six Minute Walk Test,’ before I’m allowed to fly home.

Today’s my second day at the special accommodations. Just as I start to say “good morning” to the other residents, I’m stuttering just like that Looney Tune character, Porky the Pig.  As I take my 3rd forkful of perfectly cooked, fluffy scrambled eggs… I feel an instant wave of morning sickness. 

In terms of my nausea, the in-clinic respiratory specialist doctor tells me that I might be having a temporary reaction to 3 very necessary anti-rejection medications. 

Try as I might to overlook the stuttering and the nausea; neither shows any signs of going away anytime soon.  Oh well, I figure I’d rather throw up, have the shakes and stutter everyday then not have these two perfect lungs.

I’ve been hanging to give my new lungs a real test drive, since I arrived here.   So, today I’m off to the closest shopping mall.

You bet I want to yell out, “I’ve just walked 3 hours without needing a sit down break!”

Oh, how I wish the taxi driver would speed…

The minute I walk into my room, I dash to the toilet.  Talk about ‘it’ coming outa both places, at once…  After an hour of non-stop vomiting and diarrhea, I phone for an ambulance.  I just can’t risk vomiting up all my life-saving anti-rejection medications.

Yep, you guessed it. I’m back in the hospital. I’ve been here 3 weeks.  I still have vomiting and diarrhea, non-stop. I’d be surprised if I weigh even 70 pounds now.  Even watching food ads on TV makes me run to the toilet. 

Being back in the hospital… I’m so depressed… I’d have to look up to see down.  At this rate, I’ll never go home…  I’ll never see my cat again. 

But, thank God for Gabriella!  She’s still my Outreach Worker (counsellor); even though I’m so far from home.  It’s as if she can read my heart.  It seems whenever I’m at my lowest ebb, she phones me.  All she ever has to say is “Joey, you’ve got this.  You have awesome inner strength…”  I’ve lost count of how many times she has lifted me from the deepest darkest depressions.  And, then… she and her husband fly from Tasmania to Melbourne.  Granted it’s to celebrate his birthday… But, they visit me too!

I’m discharged after 5 weeks. Finally, the bouts of diarrhea only happen after each meal.  But, that means I’ve got little chance of putting on much needed weight.  The nausea hasn’t let up… It’s still 24/7, even 5 weeks later.  And, I still sound like Porky the Pig.

In order for me to complete the required respiratory gym program, I must spend a good 30 minutes in the bathrooms, just outside the gym… vomiting and pooping-out the toast I had for breakfast.  This goes on the whole 12 weeks. 

At long, long last I’m homeward bound!  I’m confident that I will cover the required 547 yards in ‘The Six Minute Walk Test,’ so, I strut into the gym, like the cockiest hen in the house… Pulling my packed suitcase behind me. Well! Talk about a big change from 1,187 days ago?  Back then, when I first got sick, I could only walk 164 yards in ‘The Six Minute Walk Test.’ Today, I more than clinch it.  I walk 567 yards – Yes!  That’s 20 yards more than what’s required to go home. 

Due to the tummy problems, I’ve got a bit of work ahead of me to get from 33kgs or 72 lbs up to my normal weight (what I weighed age 20 until I got sick at 62) 51 kgs or 110 lbs.

 

Today is June 22, 2018.  My new lungs and I have been together 438 days.  I have been home for 262 heaven-sent days. 

Okay, so that daily non-stop nausea of 2 months plagued my first 90 days back home… I still feel, those 90 days of misery is an itsy-bitsy sacrifice, to have these two extraordinary lungs.

Here’s my list of ‘favorite things’: 

·         Snuggling with my BFF (Katie, my cat), every single day.  My other BFF cat (of 10 years) died while I was in rehab.

·         Doing 60 minutes of toning + 30 minutes of cardio (jogging or stationary biking) + 20 minutes of Yoga.

·         Doing every aspect of housework, gardening, cooking and grocery-shopping

·         Standing, while I shower for 20 minutes every day

·         Doing lots of creative writing

·         Ending each day with me dancing to 3 of my favorite 1980s tunes

·         At least twice-a-week, sitting on this bench, out the back… gazing at those 3 twinkling stars (Mom, Dad and my sister – Carol) and at the moon, no matter how faint it, (Jack) seems.  

·         Falling asleep, unafraid of dying; and knowing, those most-special 4 people are with me, ‘with every breath.’

·         Volunteering to deliver meals to the elderly and the sick.

·         Adding itinerary to my ‘50 Days’ Road Trip’ through 7 Australian states, scheduled for October 2019.

·         Only having to take 9 AM medications and only 3 PM medications.

·         No longer inflicted with nausea or diarrhea.

·         Doing 3 hours of cooking and portioning the meals into one-serve frozen meals.

·         Weighing 108 pounds!

Here’s Me at 66, August 2018 16 months after my double lung transplant.

 

 

 

Please be a registered organ/tissue donor – Online at www.donatelife.com  One organ donor can save 10 lives & one tissue donor can improve at least 30 lives.

And, I can hardly wait until early 2019.  I’ll go on the road, with my ‘SOS – Save Our Sick Campaign.’  I’ll do my free 70-minute presentations, before many community groups and clubs… All to encourage people to increase Tasmania’s current registered donor figure of 49%. But Dec 16 2018 is another project of mine:  go to “Joey & John Walk & Swing 9 to 3” at my website:  www.wavesofoneseawriting.com … and at that website is SOS – Save Our Sick too.  If you belong to a group/club – why not invite us to share these 2 free projects?  

Thank God one donor saved my life!

The End

Copyright Joanne E Galliher June 2018

 

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