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A Journey to the Other Side: Part 1


I hadn't planned on dying. That wasn't part of my view of an enjoyable, early retirement. Instead, I formed a plan many years before the target date of 4th July, 2011 and being dead wasn't included. I thought the date was a bit cute—Independence Day, fireworks and all that stuff for those on the other side of the Pacific. My personal Independence Day would result in no more committees, no more paperwork and no more budgets! In short, no more work.

links imageAs an engineer, I planned every detail. I believed that after decades of long hours, remote locations and sacrifice, I would opt out at the age of 56. Putting the plan into action involved debts being neutralised and savings converted to a diverse group of income-bearing assets. Then I had to get down to the important stuff. Boys' toys were critical. A four-wheel-drive became a foundation piece. This was linked to the purchase of a camper-trailer allowing the bush to become a long-term holiday destination. Throw in a musical instrument for mental stimulation and boyhood dreams. Then there was the shed. Add a couple of Harley-Davidsons, a well-sorted workshop and retirement should overwhelm my best expectations. I had all bases covered!

Or so I thought.

I sat in the surgery office of my long-term GP. "I beg your pardon, could you repeat that?" said my doctor. His back was turned to me as he chatted on the phone to a specialist whom I had recently visited. "Jesus Christ! Are you serious?" he blurted into the phone.

My heart rate increased. As the outsider to half a conversation, I didn't like the way this phone call was heading.

My GP put down the phone and turned to me. "Sorry about my outburst, Stewart. I wasn't expecting such a report from your specialist." Composing himself, the doctor said, "It's not good news."

Glassy-eyed, I looked at my GP, hoping that he would prescribe a couple of aspirin and a little rest. My heart rate must have topped 200 beats per minute. "Tell me how it is, Doctor."

He looked down at the floor then back into my eyes. "You have terminal lung disease, Stewart. You will be dead before next Easter. That's unless you are lucky enough to be given a lung transplant."

Driving home from the surgery was a blur. Nothing seemed to fit. My mind rattled like a bagatelle, the small shining ball bouncing off every conceivable value that I held dear.

links imageBack home, I sat on our elevated veranda together with my wife, Barbara. For once, I didn't notice the view. As I conveyed my news, the look on Barbara's face was something I never wish to see again; as though someone most trusted had just stabbed her in the heart. Together we were devastated. Our joint retirement had been destroyed. Our lives together were about to end.

I began to visibly decline on a monthly basis, such was the aggressive nature of the disease. As a consequence, I could see high levels of distress in the eyes of my loved ones and friends every time we met. The effect was particularly cruel to my wife; she watched helplessly as I headed towards my end days. As the person at the centre of these events, I was intensely aware of the sadness my illness was causing to those near and dear. This became my major focus, more so than the fact that I was dying. From a personal perspective, I had come to terms with my own passing but could not reconcile the distress I was causing my family and friends. It felt like I was letting them all down.

I was a non-smoker and never worked in the asbestos industry. The specialists stated that my disease-Idiopathic Pulmonary Fibrosis-had no known cause and, unfortunately, no known cure. My options were simple: die in a few months or have a transplant. I chose the latter.

This may have been stating the obvious; however, choosing to have a transplant does not necessarily lead to being given one, or even being put on the waiting list. The decision is not as simple as, for example, choosing to buy a new car. There are no showrooms filled with body parts of differing chemistry and specifications. Transplant organs are a very finite resource. Additionally, there is no point in giving such a valued item to an irresponsible person.

I was soon to learn that the specialists would leave nothing to chance. Over the next three months, I was poked, prodded, scanned and X-rayed together with having multiple samples taken. The specialists even checked out my mental capacity to cope with the concept of a transplant by employing a psychologist.

November arrived. I was losing my capacity to contribute physically to any task. My coughing increasingly became debilitating. I couldn't even get out of bed without triggering a wracking cough lasting three to five minutes.

Then the news broke. I was formally advised that I had achieved my desired outcome: I had made the transplant list, awaiting a possible donor. The emotions this created were diverse. Yeah! I might have a second shot at life - maybe. But it also confirmed the facts clear to all in my social circle - but stubbornly denied by me - that I was obviously dying.

links imageThe month of December, leading up to Christmas, was the very worst time of my life. Family and friends knew that I would soon leave for Brisbane in order to be close to the Transplant Centre. They held Good-Luck parties. People hugged me and shook my hand, wishing me "all the best" and "speedy return". But I knew the rate of my decline was accelerating. Things of which I had been capable previously became impossible as the calendar pages turned. The specialist team in Brisbane advised me that I was positioned in a decreasing window of opportunity within which I would be sufficiently strong to withstand the rigours of such major surgery. But that window was rapidly closing. If a suitable donor wasn't found quickly, the proposed operation would be cancelled as it would kill me. Consequently, not only did I have to deal with an ill-defined timeframe, I was heading rapidly to a point where, once reached, hope was gone. (I had formally been advised that the "waiting period" ranged from 2 hours to 2 years.)

From my Engineering days, I knew that there were always hiccups to any major project - despite the most rigorous planning while using the best people. I viewed my proposed operation in similar light. The specialist team in Brisbane might have a reputation for a very high rate of success, but in my declining condition, I expected the worst. I shuddered at the thought of waiting in an unfamiliar city while experiencing an ongoing decline in my health - separated from those whom I loved.

And all through this, I kept up a cheerful façade in the lead up to Christmas.

The handshakes and hugs continued. Each was like being hacked by a rusting saw. I did not believe that I would see those lovely people again. Eventually this led me to decline well-intentioned parties and dinners - they were tearing me apart. I can best describe that experience as a long slow walk to the gallows.

My mind headed into seldom-visited corridors of memory. With incredible clarity it engaged a review of all special events that I had experienced throughout my life. Good times, adventures, parties, career, family and friends. The list went on. In quiet moments I sat and "watched" my life unfold, a bit like watching old family movies. In computer talk, I was reviewing my entire hard-drive.

Part 2 will be published in the April 2013 ISHLT Links Newsletter.

Disclosure Statement: The author has no conflicts of interest to disclose.

Stewart Howard is a retired engineer who enjoys golfing with his dear wife, motorcycling where it doesn't snow and wild music on his electric guitar.

Photo credits:
Photos 1 and 2: The author 13 months pre-transplant, on vacation with wife Barbara in New Zealand
Photo 3: Prior to transplant during the author's worst Christmas: advising his grandson (age 5) that grandpa was leaving in the hope of securing a lung transplant.