At One With My Heart

Anniversaries are efficient at evoking memories. I recently celebrated an important one, a first. It all started just over a year ago with a phone call at 1:10 in the morning on April 27th. I remember my heart stuttering as I changed out of my night wear and “raced” to add items to an already packed suitcase. Night mask. I-Pad. Magic bags. The murder mystery from my bedside table. Medications? No. I’d never need those medications again.

The ambulance ride was comfortable; the crew, as always, made me laugh and this time shared in my sense of anticipation. At the Calgary airport, my middle daughter and I hugged each other in the chilly darkness then boarded a Medevac plane to Edmonton. One more ambulance ride from the Edmonton airport to the Don Mazankowski Heart Centre and there, during an operation lasting eight hours, I received my new heart.

Some of the memories from that day are blurred, thanks to the trauma of surgery and powerful medications. Others, especially the pre-surgery ones, are more salient. In the cold sterility of a passageway, lying alone on a stretcher and waiting to enter the operating room, I remember thinking of the people who had just lost their loved one. I thought about their courage and generosity in the midst of overwhelming sadness. I grieved with them.

Transplant recipients and donor families are encouraged to write one another, but the letters are vetted and redacted to ensure that identities remain a secret. One of my fellow heart transplant recipients received a beautiful, detailed letter from her donor family just before Christmas, and she shared it with me. Although some areas were obliterated with a black marker, she was still able to get a good sense of the personality and life of the young woman whose heart she received. I have written to my donor’s family, expressing my gratitude and outlining the incredible changes in my life that the new heart has brought about. To this date, I haven’t heard back from them. I’ve speculated about this at times. Is their continued grief making it too difficult for them to write to me? Are they second-guessing the decision to donate their loved one’s organs? Did they not feel kindly toward the family member who donated their heart?

For the longest time I yearned for that letter from my donor’s family and then, over time, I convinced myself that I didn’t really want to receive it. Perhaps it had something to do with articles that I read about transplant patients who suffer depression and anxiety, and struggle with their identity. The experience of receiving an organ from a fellow human being who died is overwhelming, almost surreal. And it’s easy to accept that a new heart alone can cause emotional distress: it’s the only organ that defies the simple definition of pump or machine. Some patients actually develop alarming symptoms: a strong, unhealthy emotional bond with the donor or a sense of invasion by an alien entity. I’ve been fortunate not to experience any of these more extreme symptoms, but I did briefly contemplate the issue of identity when someone dubbed my new heart “Bob.” I smiled initially, immediately thought of Bob Newheart. The moniker Bob had a perky cachet to it. It caught on in my family and friendship circles (some people still use it to this day), but I never became completely comfortable with it. I worried that it implied a lack of respect, even though the person who chose it and those who used it would never be guilty of that. Perhaps more than the concern about “dishonouring” the heart was an underlying need for union, not separation.

The closest I’ve come to learning anything about my heart was an EKG technician’s comment that I had a young heart. I had no idea how old it was, I told him. Heart transplant recipients can receive an organ up to fifty-five years of age. No, he insisted, it was a young heart; he could tell by the peaks in the graph. Even this glimpse into my heart’s history hasn’t changed how I visualize or feel about my heart. The designation “young” covers a large terrain.

I know nothing about my donor and I know nothing about my donor’s family. Perhaps that is always the way it will be. I respect that.

I am at one with my heart.

Advertisements

Mountain-Stranded on New Year’s Eve

An afternoon of cross-country skiing at the Barteaux, my sister-in-law’s family in Margaretsville on the Bay of Fundy, a fragrant hot supper of chili con carne and home-baked rolls, games and chats until the clock struck midnight…these were our best-laid plans for New Year’s Eve 1989. Until a capricious weather system over the bay had its say.

We did make it to Margaretsville, enjoyed the skiing. Then, a CB radio announcement over dinner alerted us to an approaching front of freezing rain. We hastily downed the chili, loaded the skis into the back of Old Nellie, our Ford LTD station wagon, and set off down the mountain toward our home in the Annapolis Valley. Old Nellie was my vehicle – sombre-looking, long and black, with wood-grain paneling on the sides. Someone once noted that I looked like Morticia behind the wheel! Nellie had flourished in our old home in Vancouver, but since our move to the Annapolis Valley a year ago, she had fish-tailed in winter and taken me into the ditch on three separate occasions. Studded tires were in order, I claimed, or a new vehicle with a better centre of gravity. The pleas fell on deaf ears. It all came down to the driver, husband Joe maintained.

Barely a minute into the drive the freezing rain started descending: cold and wet from the heavens, but then morphing immediately into ice upon contact. No other soul was about. The car crawled along the road in the ink-strong darkness, its headlights barely capturing the icy surface. And I knew, just knew with a sickening drop in my stomach as we approached the sweeping curve on the Stronach Mountain Road, that the car wouldn’t make it. I glanced over at Joe. “Watch me,” he said, as if he’d read my mind. Hearts in throats, we watched helplessly as Nellie struggled to negotiate the curve, then skittered to the left and into the oncoming lane, and finally nose-dived into the rock-strewn ditch that hugged the exposed cliff of the mountainside. I recall triumph flickering briefly in the midst of the predicament. Although expert manoeuvring on Joe’s part had prevented us from tumbling off the cliff face to the right and into the trees below, here was proof on a platter that it didn’t come down to the driver!

Like many predicaments, ours demanded a speedy decision. Staying in the vehicle, we decided, was not an option. We could walk (awkwardly slide) down the road into the valley and ask for help at the first available house, or walk gingerly back up the mountain, a trek of about five-and-a-half kilometres, to Margaretsville. We chose option number 2.

Shaken but unhurt, we clambered out of Nellie and set off, back up the mountain. Every one of our movements was robotic – we had to make sure that each footfall made lasting contact with the ice that coated the shoulder of the road. And still the rain came down, perfectly benign until it hit the road and the human beings negotiating it. Occasionally, lights would beckon from a farmhouse set back from the road. Should we knock on the door and ask for help, we wondered? We had some qualms about who might come to the door; besides, we couldn’t ask a Good Samaritan to take their vehicle out on the road and potentially suffer the same fate we had.

One hour passed – two, three, then four – as we trudged back to Margaretsville. Two adults and three little girls, aged 11, 8 and 6. The freezing rain built slabs of ice on our backs, created icicles that dangled from Joe’s beard and moustache. We didn’t talk; everyone was focused on staying upright. And finally, after four hours of non-stop tentative walking, we were there. The Barteaux kids were long abed, but ours got parked in front of the fire as their Aunt Debbie bustled about, pulling out mattresses and bedding for the over-nighter, placing a big pot of milk on the stove to boil for hot chocolate. The best part of the evening for the girls: that hot chocolate was garnished with mini marshmallows. (Our girls had a pretty rough upbringing – no pop, chips or candies allowed, except on Halloween. The occasional hot chocolate, yes, but absolutely naked.) And to top off the evening, Uncle Ken fired his hunting rifle at midnight – three times, I believe – to usher in the New Year.

Nellie left the family the next summer, traded in for an unglamorous K-car. Just before that transaction Joe and I took the girls to Europe on holiday. In the southern Bavarian region of my father’s people we took a hike up a mountain one day. The air was bracing, the vistas spectacular. There were a lot of complaints coming down the mountain, though. It was taking too long, it was boring. I reminded the girls of New Year’s Eve, how they hadn’t once whined on the slow and torturous trek back to Margaretsville. “Ah, but that was fun,” one of the girls pointed out.

As the saying goes: Attitude is the difference between an ordeal and an adventure.

With thanks to those who enriched my experience: Debbie and Ken Barteaux and their children, Jill, Katie and Mitchell, all formerly of Margaretsville, N.S., and my family: late husband, Joe, and my daughters, Marissa, Courtney and Crystal.

The Living Dead

Tombs and monuments, blinding white, shimmered in the mid-day heat as my taxi driver and I entered the main cemetery in Ecuador’s largest city of Guayaquil. I love exploring old graveyards, and had hired my driver to accompany me through this one. Freddy was short, solid as an oak, and after his afternoon escorting a Canadian gringa he would be attending his twice-weekly cockfight.

Freddy and I started at the lower levels of the sprawling hillside cemetery, walking in the marker shadows of weeping angels and mustachioed generals. Mausoleums abounded in this final resting area for the wealthy. One tombstone stood out among the others: a granite monolith erected to the memory of an assassinated president.

About an hour in, we started ascending a staircase that led to the summit of the cemetery’s highest hill. The marble steps, cracked and polished by time, were flanked on both sides by multi-storied crypts. From time to time I stopped to look at the inscriptions and at the flowers, candles and mementoes which family members and friends of the deceased had placed in the “windows” on El Día de los Difuntos – The Day of the Dead.

Close to the top I asked Freddy if we could stop for a moment. It was oppressively hot and humid, and I was beginning to feel short of breath. As I stood there, panting, a tall, gaunt man shot out from between two of the multi-crypt buildings and hurtled in our direction. For a moment I was hypnotized by the cold fury in his eyes. Then I caught something out of the corner of my eye and turned to stare in fascination as Freddy coolly aimed a handgun at the man. It was only a matter of seconds before he returned it to his pants pocket. “Gun… knife…they knew the odds,” he said. He sounded supremely satisfied.

“They? Knife?” I could barely eject the words.

“Yes. There were two of them. You didn’t see the knife?”

I didn’t feel shaken then; the jelly knees always seem to come later. As we descended the staircase, Freddy explained that the men were drogadictos. It wasn’t unusual to find them in the cemetery, he added. That’s why he’d brought his gun along.

It was the last day of a teaching stint in Ecuador for me. On hearing about my experience, one of my former ESL students told me: No hay como un poco de peligro y adrenalina para sentirse vivo. There’s nothing like a little danger and adrenaline to make you feel alive.

Yes, there was exhilaration, the relief of emerging unscathed from a dangerous situation. But the elation soon gave way to introspection. I can’t rid myself of the image of the addict, and the wild-eyed anger that he directed at Freddy and at me. How many people live like him – day in and day out – desperate or in constant despair? One foot already in the grave?

His eyes will always haunt me.

 

 

 

 

 

Life With A New Heart

My new heart came to me on April 27th of this year. Here’s what life’s been like during the four months after my transplant:

  • My daily experience now is all about drugs. I started off in hospital in Edmonton with a stunning rainbow collection of forty pills and capsules in the morning alone; these have now been whittled down to eighteen. And there are more to look forward to throughout the day. The anti-rejection drugs are a lifelong prospect, but some of the others will become negotiable. It’s exciting when I get to drop one from the slate.
  • Side effects are a natural go-along with medications. They can be less than pleasant at times, but they become the “new normal.” Interestingly, I have developed a total aversion to sweets. You could slide a piece of whipped-cream-topped hazelnut torte under my nose and I would not have the urge to salivate.
  • Water, water everywhere. I’ve been drinking at least two litres of water per day to keep my kidneys in good working order. This is another lifelong thing. Sometimes, when I’m standing around with my water bottle or glass of water in hand, I remind myself of character Julian on The Trailer Park Boys. He’s the one who always – no matter what he’s doing – has a tumbler of rum and coke in his hand. Just water for me, though.
  • Physiotherapy twice a week. I have a slave driver for a physiotherapist. She likes to take me to another level by tricking me into thinking I’m still on the old one. Good strategy when it comes to me. In any case, I am making progress. I can climb a flight of stairs!
  • Cardiac biopsies. These are performed every two to three weeks. A cardiologist sends a pair of miniature forceps down the jugular vein to retrieve bits of the heart, just to make sure the heart isn’t being rejected. The frequency of the procedure will diminish, but doctors will continue to go for the jugular throughout my life.
  • Summer in Calgary usually flashes by but this year it went by excruciatingly s-l-o-w-l-y. I experienced it in all its glory.
  • During the past four months, I got to spend quality time with the doctors and nurses of the cardiac transplant team at the Foothills Medical Centre. Best of all, during that super slow summer I got to spend more time with my amazing sisters, daughters and friends – wonderful caregivers and champions, all!

I finished this post right at the end of the four month mark and the next day I was admitted to hospital for post-surgery complications. The Transplant Team did promise that the first year would be difficult. No matter. I am at home now, my new heart is still strong, and the skies of September are achingly beautiful.

O Tannenbaum

A typical Hare/Charlie Brown Christmas Tree

A typical Hare/Charlie Brown Christmas Tree

O Tannenbaum

     Picture a miserably cold day on Nova Scotia’s Bay of Fundy in November of 1988. Three young girls can’t conceal their disappointment as they stand shivering by a spruce tree. It lists to the right, its posture permanently shaped by winds racing up from the bay.

“What about this one?” Grinning, my husband points to another equally sorry-looking specimen. You could easily drive a football through the yawning spaces among the branches.

Just an hour earlier our girls had piled into the van for the drive up the mountain, their spirits high. An axe, an old two-handled saw and coiled rope accompanied them – all the equipment needed to snag a Christmas tree. Now it was obvious that the hunt for a tree wouldn’t live up to expectations. They made a last survey of the evergreens dotting the slope down to the choppy waters of the bay. Every tree displayed evidence of consistent exposure to the elements.

“They’re all the same, girls,” I confirmed, bracing my shoulders against the wind. “Let’s pick one and be done with it.”

My husband was thrilled with the lop-sided Charlie Brown Christmas tree that he culled that day from his grandfather’s farm on the north ridge of the Annapolis Valley. Gramps had long maintained a custom of cutting down a wind-carved spruce from his own property for the festive season. The less symmetrical the tree, the more satisfaction he seemed to gain from his choice. It was obvious that his grandson would follow in his footsteps.

The man whom my husband idolized was eighty-four years old at the time we moved to Nova Scotia. A woodsman and cattle farmer, Gramps could still repair barn roofs, drive the tractor, and toss bales of hay onto the wagon. “Tougher than a boiled owl,” is how one of his neighbours on the mountain described him.

Initially, the girls and I resented the Gramps-style Christmas trees. In 1991, the first year that we took our standard poodle on the tree hunt, the girls even slung a sign around his neck: I refuse to come home with an ugly Christmas tree. It didn’t help. Over time, however, we came to value them for their distinctiveness. Friends and neighbours would drop by to see them – they’d rapidly become a local legend.

The girls adorned each year’s tree with home-crafted decorations, or ones they had made at school. And the wide spaces between the branches provided room for the candles that were part of my German heritage. Every year we would have carol sings (a bucket of water close at hand) in the golden light of those candles in their snap-on holders. O Tannenbaum, Silent Night, Angels We Have Heard On High…my husband’s baritone voice would lead us.

In June of 1996, just as the haying season was beginning, Gramps contracted pneumonia and died peacefully, in the farm homestead, at the age of ninety-two. Five years later, in July of 2001, his grandson – my husband – passed away from cardiac arrest at the too young age of fifty.

Soon after Joe’s death, I moved out west to Calgary. I continued the tradition of a live tree for a few years, even helping to chop down a specimen one year on crown land south of the city. Then I resorted to lot-bought ones that shed their personalities as readily as their needles. And three years ago, I did the unthinkable: I brought home an artificial tree. The act struck me as heretical, but I could no longer manage the live trees on my own. I soothed my conscience by noting that the live trees had always given me the sniffles, and that they declined rapidly in Alberta’s notoriously dry climate. In essence, I created a new convention.

The Charlie Brown Christmas tree tradition, however, remains a powerful unit in my memory bank. It harks back to a happier, less complicated phase of my life. The annual harvest of our tree was a ritual that provided the perfect combination of comfort and excitement. Above all, I’m grateful for this tradition’s legacy to my children. They enjoy the simple things in life, and they also have a special appreciation for the unique and the off-beat.

Candles lit on one of our Charlie Brown Christmas trees.

Candles lit on one of our Charlie Brown Christmas trees.

Ghosts, Be With Us!

A professor of Spanish in Ecuador once asked me if I enjoyed any unusual hobbies or past-times. “Exploring old graveyards,” I offered. The teacher glanced sharply at me, shuddered when I mentioned the word ‘graveyard.’ What earthly interest could I have, he wondered, hanging around in those?

Well, Señor, heritage graveyards are fascinating places to visit. I don’t go there to indulge a ghoulish interest in death. On the contrary, I find graveyards fertile territory my for my inner history buff. Add that to my list of passions of well.

My interest in old graveyards started years ago in a tiny seaside cemetery in Lunenburg, Nova Scotia. Here’s a picture of the two tombstones that got me hooked.

Waterfront cemetery, Lunenburg

Waterfront cemetery, Lunenburg, N.S.

The gravestone on the right honours Sophia Matilda, who died on November 21, 1861 at the age of 33. Her consort, John Young, is buried beside her, as is their daughter, Ida. Ida was born on the same day that her mother gave up the ghost. I was struck by the poignancy of this history:  John Young’s wife died in childbirth, a common fate for young women of that time, and the baby survived the birthing ordeal, only to die at the age of nineteen months. Can you imagine the tot, curly-headed, in a ruffled frock, squealing in delight as her father tosses her into the air? The agony of the father, losing this child and her mother in such a short period of time? And John Young didn’t get to live long after little Ida’s passing; he died just three years later at the age of forty.

Life was often brutally short in those times, and some inscriptions even provided cause of death: Died in collision with a steam engine.  Killed by a cartwheel running over him.  At least a short stay on this planet signalled early admission into eternal paradise. The epitaphs found at the beginning of each chapter in my novel, Alyda’s Bluff, speak to this theme. Here’s one of my favourites: This lovely babe so young, so fair / Called hence by early doom / Just came to show how sweet a flower / In paradise would bloom.  Quaint? Yes, especially to many people in our post-modern secular age. Beautiful? Yes. Once again, the inscription offers us a poignant glimpse into the values of another century.

Poignancy, and poetry. I’ll close with a parade of names I’ve discovered on different heritage tombstones in Nova  Scotia:  Ambrose, Damaris, Aminella, Havilah, Rhedora, Lavenia, Allithea, Obediah, Sybley, Zebina, and Primrose. Tongue-friendly, all of them, aren’t they?  Little Primrose Kilpatrick was actually a boy.  He died on November 21, 1888 at the age of 9 months, and lies in the Hillside Cemetery of Port George. Right by the eternal waters of the Bay of Fundy.

The old burying grounds of Canada have always offered me peace. Peace was evidently not on the mind of that Spanish professor who reacted negatively to my interest in them. I didn’t learn the reason for his aversion to graveyards, but I’m willing to keep an open mind about it. On my last day in Ecuador I visited a magnificent cemetery in Guayaquil, Ecuador’s largest city, and experienced a terrifying encounter there.

I’ll tell you all about it in one of my upcoming blogs.

Heart to Heart

Life—it’s a waiting game. Our minds routinely journey into the past, but we also spend considerable time looking into the future. Anticipating events like the birth of a child. Awaiting the results of an important exam. Begging for the end to a long and difficult night.

I’m waiting for a heart.

Not too long ago I was “listed,” placed on Alberta’s cardiac transplant waiting list. I’ve entered the end stage of a heart disease called ARVC—arrhythmogenic right ventricular cardiomyopathy. The ailment has been around for centuries, but was only recognized as a distinct medical condition in the early 1980s. In a process of programmed cell death, fibrous/fatty tissue takes over the healthy heart cells, staging its invasion from the right ventricle. The rogue cells can trigger rapid heart rhythms that lead to sudden cardiac death, especially in the young and the athletic. To offset this risk, I have a cardiodefibrillator unit implanted in my chest.

No one is born with ARVC, but the disease may be present at a young age. I have struggled for decades, under various diagnoses, with an arrhythmic heart. Hindsight allows me to isolate a possible early sign. Picture me as an eight-year-old, at the edge of a swimming pool in a leisure centre, my chest tight with exertion. An instructor, jabbing a finger in my direction, sends me back to the previous level of swimming lessons while the other members of my group advance to the higher level. I always felt short of breath exercising in water, and never did learn how to swim.

Other memories come to the surface. I did well on level terrain for decades, running to catch commuter trains, playing tennis, handling my exuberant dog. I got quite short of breath during these types of activities, but I simply accepted the need to expend more effort than others. By my forties, however, I was making frequent stops on mountain hiking trails or paths to hill-top fortresses, ostensibly to take photographs or to admire the scenery. Soon, the people who accompanied me were literally pushing me, bracing their arms against my back, taking turns to march me up those pesky slopes.

Exciting as a successful heart transplant may sound, it’s not a cure. During my lengthy evaluation for eligibility by the Cardiac Transplant team in Calgary, team members reminded me on more than one occasion that I would be “exchanging one set of problems for another.” Like all transplant patients, I’ll need to take anti-rejection medications for the rest of my life, and these may come with side effects. My compromised immune system may not be able to ward off certain infections, and I’ll even start developing coronary artery disease of the new heart. I have never doubted for one moment, though, that I would assume all the risks. I’ve even made up a post-surgery bucket list, one that highlights activities that I’ve done before. I dream of carrying sleepy grandchildren upstairs and to bed, writing another novel, beachcombing for stones and sand dollars on Nova Scotia’s disparate shores. Above all, I want to be a helper for my family and for my friends, not a burden. Maybe I’ll decide to revise that list in the future, but those are my wishes for now.

A new heart. A new beginning. Right now I’m considered low priority (still living at home and functioning without the assistance of a medical device). If my condition worsens my status will change, but it still may take one to two years before a heart becomes available for me. Since we rely on choice and altruism for organ donations in this country, they are a rare act. I believe it’s a system that suits us culturally, but it requires extensive improvements. Raising awareness through education is important, as are administrative advances. In Alberta, for example, a bill that provides for a provincial agency for organ donation, as well as an online donor registry, is expected to become law during the fall sitting of the legislature. It’s hoped that this new system will help trim waiting lists.

Organ donors are typically people who have suffered irreversible brain trauma (through an event like a stroke or an automobile accident) and have been placed on life support, something that occurs in only 1% of deaths. Even if someone gives consent through a signature on a driver’s licence or a healthcare card, family members may veto the patient’s wishes. If you are committed to the concept of organ donation, please discuss this with your loved ones.

I’m acutely aware that the promise of renewed life for me signifies the end of life for someone else. One circle of family and friends will be suffering loss, whereas my special circle will be celebrating hope. It’s a solace to know that the gift of donation helps family members find positive meaning in the loss of their loved ones.

Someday we’ll usher in an age of sophisticated mechanical hearts. Or, we’ll reap the benefits of stem cell therapy. Right now, however, I am registered to receive a human donor heart.

I’m waiting for that incredible gift.