Giving thanks - without the turkey

My parents happened to be in town a fortnight ago and for the first time in 10 years their visit to the State's capital coincided with the annual thanksgiving service for organ donors. The event has been going for 20 years, and my parents usually attend a service in regional Queensland, travelling for over an hour each way to get there. A bit of a hassle for those who dislike travel, but they would never dream of not going.


I’ve mentioned before that my father was very fortunate to have received a heart transplant almost exactly 10 ½ years ago.  Physically, he’s relatively well for a 72 year old man, but as a result of (well… whatever) he has vascular dementia, which is fast becoming his biggest health issue and the most challenging for my mother (his carer).


Our whole family, but especially my parents are eternally grateful for the generosity of the stranger and his/her family which has allowed my father many many years he would not have otherwise have had.  Which is why, each year, they attend the thanksgiving service, coordinated by Donate Life, to recognise the selfless acts of organ and tissue donors and their families.


Because my parents were here in Brisbane my brother and I were able to attend the service at the University of Queensland with them. It was the first time I’d attended and I was (more than) confronted by the fact that I hadn’t ever been before. After all, I too benefited from the anonymous gift, by having my father in my life over 10 years longer (to date) than I would have otherwise.


Of course I should admit at this point that I basically cried through the entire thing. It was beautiful but it was sad. Very bloody sad.


While my brother was parking I accompanied my parents into the venue. We shared a lift with another couple (most likely in their 60s). Given the tenor of the occasion, we also shared circumspect but comforting smiles. Amazingly, despite a crowd of about 1000 I saw them twice inside. And by then they had donned their green ribbons.


Green ribbons were provided to donor families; maroon ribbons to organ recipients. On seeing their green ribbon I felt immense sadness. Perhaps it was a distant relative who had inadvertently given generously, but I could not help but think it was their child they had lost. I clung to some hope that they had other children elsewhere unable to attend, and that they hadn't lost their only child.


People packed into the huge hall. The stage was beautifully decorated with fairy lights, candles and roses. A choir sat to one the side. As I looked around the room I was overwhelmed with sadness. I watched two girls in their late teens come in alone wearing green ribbons and wondered who they were honouring. I saw people sitting alone, felt their grief and tried to imagine who they'd lost. I felt both gratitude and guilt to be with the recipient of a maroon ribbon, rather than a green one.


The event ran smoothly. I cried when a lone bag-piper played Amazing Grace and again when country singer Melinda Schneider sang Wish You Were Here and later What a Wonderful World, with the choir. I cried when 20^th anniversary footage was shown to Wendy Matthews’, The Day You Went Away; a song which has continued to play in my head ever since. Constantly and relentlessly.
The first speaker was a mother of a 5 year old girl who died tragically several years ago. Through her devastation she took solace in the fact that 5 people have been given a second chance as a result of her family’s heartbreak; one for each year of her precious daughter’s life.


There was a moving speech from a woman who was the recipient of a double lung transplant. She was hospitalised and had given up all hope when the lungs became available. Her impassioned plea for us to make the most of our lives and appreciate each breath we take was heart wrenching. And yet, she was one of the lucky ones.


My mother leaned over to me at one point and asked if I thought that the family of my father’s heart donor was there. We looked at each other. The enormity of that the question was too overwhelming to contemplate.

• Australia also has one of the lowest donation rates in the developed world. In 2010, the Australian population had 13.8 donors per million people


• 40% of Australians do not know the donation wishes of their loved ones


• Around 1700 people are on Australian organ transplant waiting lists at any one time


• On average, people on the transplant list must wait between 6 months and 4 years


• In 2010, 309 organ donors gave 931 Australians a new chance in life, the highest in any year in the past decade


• When my father received his donor heart in in December 2000, fewer than 200 heart transplants had taken place in Queensland


• Although I joke that I'd like to be cryogenically frozen, I've registered as an organ donor and my family (more than any other) knows what that could mean to others.

I’m extremely grateful that I got the opportunity to go to the thanksgiving service with my family. I like to think I’d go in future.


Before the service started the Emcee told us not to worry about our tears or try to stifle our sobs. “We are all in this together,” he said, “no one here will judge you.” As I shed endless tears, I could see shoulders shaking and people comforting one another. He was right. We were one large family sharing each other’s grief and gratitude.


As we were leaving I again saw the couple from the elevator. My red-rimmed eyes would have been obvious, along with my father’s maroon ribbon. We smiled understandingly at each other as we went our separate ways.

'The Rain'

My mother recently sent me one of those ‘please pass on’ emails.  You know the kind…. imparting preachy life lessons, promoting breast cancer awareness and the like.  Although I read these when they pop into my inbox I rarely pass them on.  And I have to admit, even though some hit home, I forget about them as soon as I click on the little X in the top left or right hand corner to close the message.

Until recently.  Because the email forwarded by my mother was probably a bit more significant than most.

A year ago I wrote a post to celebrate the fact that it had been 9 years since my father had a heart transplant.  I pondered on the fact that we had him with us for so much longer than we might have; and how much more life he had experienced as someone else’s gift pumped blood throughout his veins.

But there’s no such thing as a free lunch.  And the gift of life, like everything else, comes with trade-offs.  Drugs that suppress dad’s immune system mean that, although he goes nowhere near the sun, he continually has skin cancers developing.  He is, in fact, currently undergoing radiotherapy for a deadly melanoma known for its attack on those with suppressed immune systems.

But the most challenging of side effects is not visible.

My father has vascular dementia.  Caused, I understand, either by an earlier heart attack or during his life-saving heart surgery ten years ago.

So far only his short term memory has been effected, or more specifically, his ability to transfer something from his short term into his long term memory.  I am sure there is a term for this but that doesn’t really matter… to us anyway.

It started slowly, as if he was just a bit absent-minded; where once he had been quick-witted.  But it is now at the point where he isn’t really able to retain any information.  Unlike Drew Barrymore in 50 First Dates, he doesn’t remember the day’s events, only to awake the next morning in some sort of Groundhog Day fog.  He remembers nothing recent.

A typical 10 minute conversation with him (for me, for example) will comprise him asking the day two or three times – at least.  Each response will be followed by ‘When did we arrive here at your place?’ and ‘When do we go back home?’  In fact I sometimes entertain myself by pre-empting the next question before he can ask it.  He will also enquire why he is here (rather than in his hometown).  This visit I am having to explain that although he had a merkel cell carcinoma removed from his face, it is so fast-spreading he is here for radiotherapy.  Just in case.  Obviously then he queries how long the treatment lasts (5 days a week for 5 weeks) at which point he becomes despondent (at being away from home for so long) and usually comments that perhaps he isn’t worth all of this trouble.

But he is.  Obviously.  I feel for my mother who has the patience of a saint though admits to occasional sarcastic responses to his never-ending questions. But her dedication is amazing.  My father recently spent a week in hospital and my mother camped out beside him for 12hrs a day in the event a doctor visited.  Dad needed my mother to answer the questions.  ‘Yes his bowels moved.’ ‘No, he hasn’t eaten lunch yet.’  A doctor giving instructions or advice to my father was also not an option.  It is at those times that I am overcome with guilt at being so far away and not able to provide more hands-on support.

Hard as it is for my mother, I cannot imagine what it is like for my father, who marvels at his long term memory but who cannot tell you what he did 5 minutes ago, or 5 hours ago.

It makes telephone conversations difficult.  We are limited to me questioning him about the weather, or about whatever he is doing at that exact moment.

A couple of months ago I picked up the phone to call my parents. I then realized it was Wednesday and my mother would be out (as she is every Wednesday night for an hour or so). Although I talk to my dad most evenings when I call home, it is usually just for a minute or two and he asks the same questions (about work etc) again and again.  This night I started to put the phone back on the hook before I thought about what I was doing.   I checked myself and realized I was being incredibly selfish.  Just because I would find the call harder work, and because he wouldn’t remember the conversation was no reason not to reach out and make contact.  He is thrilled by calls.  If mum isn’t home, he dutifully writes down who has called, though not recollecting anything from the conversation.

So I called.  I think there was football on TV, so I asked him about that.  We talked about the weather, my work, my brother and his family.  The usual.   I talked to my mother later that night as she called back when she saw dad’s note.

The little tale in the email my mother forwarded me was called ‘The Rain’.  It was (supposedly!) relayed by a nurse who encountered an elderly man who came into her hospital to have stitches removed.  It was early in the morning and he was impatiently looking at his watch.  She asked if he had another appointment.  He said he did and she enquired what it was, expecting another medical appointment.  He told her that his wife was in a nursing home and he went to give her breakfast every day at 9am.  He also said that she had Alzheimer’s and hadn’t recognized him for years.  The nurse asked why – if his wife didn’t know who he was, or indeed, when or if he visited – did he go everyday.  His reply was, ‘She may not know who I am, but I still know who she is.’

I saw a distant relative a little while ago.  We were talking about my father.  They commented that they were worried that his long-term memory would be next and how horrible it would be when / if he forgot who we were.  I knew they hadn’t seen my father for 6 months or more but innocently queried if they had ‘run into him’ recently.  No, they said, they actually preferred to remember him more as he was and didn’t really want to see him like they believe he is now.

Another friend recently commented on an elderly relative who had Alzheimer’s.  The relative was dying, but my friend said it wasn’t really upsetting as (the relative) had really died to them years ago.  I didn’t say anything but was horrified.  Would she, I wonder, want her family to stop visiting her if she forgot who they were, or would she hope that they still held her in enough esteem that they actually wanted to see her even if she was oblivious.

The old man in the email wasn’t expecting anything in return from his wife.  He didn’t expect her gratitude or adulation.  Perhaps he felt it was his duty or his obligation.  Perhaps he felt he signed on ‘for better or worse’.  It did, however, remind me that particularly in my father’s case – although I hate to admit it - it isn’t all about me.  Even if my father doesn’t remember the moments, it doesn’t mean they don’t exist.

Borrowed time

I originally posted this on 10 December 2009, but deleted it when I changed the theme of this blog.  However, in retrospect, this entry means a lot to me, so I am reposting it. 

Nine years ago someone died. I don't know how or why. I don't even know who. But I do know that their death benefited my family in a way that we will never forget and in a way that we can never repay.

My father has had heart problems for as long as I can remember. I vaguely recall his hurried trips to Brisbane from regional Queensland when I was a youngster. Not to mention the regular check ups which, to my mind, always seemed tokenistic and the rotating array of interns, fairly disinterested.

He was an unlikely candidate for early-onset heart problems as a non-smoker and non-drinker. As a child and young man, he was an athlete - reportedly excelling at most sports he played, before settling into rugby league. And in those days he was as close to 'professional' as you could get.

So, he was a fit and healthy bugger. But, his heart wasn't. For most of my life I had known that - at some point - my dad would need surgery to make it all better. The doctors just needed to wait until it was bad enough to do something about it. I was overseas in 1996 when they finally discovered that the problem was worse than they initially thought. The wall of the pumping chamber of his heart was damaged. It seemed that the rheumatic fever he had as a child was more brutal than anyone realized and it meant that the valve replacement they had always planned wouldn't make any difference. Then came the news patients and their families dread… The only option available to him was a heart transplant.

Devastating as the news was for my family, we took solace in the fact that we still had time. He was only 57 years old and still quite healthy. The life or death wait for an organ donor and transplant surgery seemed a long way off.

His only grandchild was born later that same year. Always good with kids he was a devoted grandfather and 'Tinkers' seemed to revel in the attention. But as 60 approached his health worsened. I was overseas (again) and insulated from the stress when his pacemaker failed and he had a cardiac arrest. He was in hospital at the time and easily resuscitated, but my mother was jarred. But defibrillator installed he was again sent home. To wait. Not for a donor, but to be sick enough to even make it onto the waiting list.

Only months later, in December 2000, he was again admitted to intensive care. My mother's correspondence had become filled with increasing stories of his deterioration. A man, who had very recently played an excellent game of tennis now had difficulties walking around the yard. Worse still, there were comments from others. My once-upbeat mother sounded worried. I was wracked with guilt at being so far away - with my father so ill and my mother obviously needing support.

After being in hospital for a week and undergoing a barrage of tests there was little else the doctors could do to improve his condition. My father was officially added to the organ donor register. It was Saturday. The transplant team delivered a sad message for others, but a good one for us: that it was a time of year when more lives are lost and more donations (inadvertently) made.

I arrived home from overseas late the following day and was surprised to see my recently-active and healthy 61 year old father looking old. He had always looked so young for his age. That night, on Sunday the 10th of December, my father called from hospital to say he had been told they had a donor heart for him.

We raced up to the hospital. It was 9pm. The next 12 hours were surreal. Though the donor heart was a match, we would not know until about 3am if it was undamaged. My mother and I waited overnight with my father as he was prepared for surgery. It was an emotional night, but what I remember most now, was how resolute he was that he HAD to have the transplant. He didn’t seem to consider the alternative. His only fear was that the transfer wouldn’t take place. Never once did he speak of possible repercussions of having the surgery – death – either during the operation or shortly after. So then, it was only joy that greeted the witching-hour news that the heart was good and the operation would go ahead.

We walked him to the theatre at 5am before leaving him in the hands of green robe-clad surgeons. As the rest of the world awoke, we started making calls to tell friends and relatives. And then waited.

Four hours later dad was out of surgery. He woke later that day. There were a few early hiccups, but these related more to the enormity of what had happened and the emotional rollercoaster that accompanied it. The concoction of drugs he is on prevents his own body rejecting the interloping heart. As yet it hasn’t.

He was as good as new. Still is. Almost. My father used to be larger than life. He loved, played, worked, stressed and obsessed with passion. Whether it was battling illness for years before the surgery, the surgery itself, or the concept of living on borrowed time, he is changed. He isn’t the same. I suspect that there are some emotional scars that could only be understood whose heart was stopped, removed and replaced by a stranger’s. His confidence has diminished. He often talks about feeling unworthy. Undeserving. But I think, ‘If not him, then who?’ But despite this, there are still glimpses of the old dad and we treasure them.

Nine years have passed since the stranger’s death. My father has seen his only grandchild grow from a toddler to a beautiful teenager. He has (to date) had nine extra years to wander this earth, spending time with his family and friends. And those of us who love him (and there are many) have been blessed to have him for almost a decade more (so far) than we otherwise might…

The night before the operation, as we stalked the corridors of the hospital, another family was echoing our actions. A 21yr old man was to receive the lungs from the same donor. His wife and parents were there. At the hospital. My mother and father saw them often during regular transplant checkups. Never responding as well as dad, the young man died one year after the transplant. I often wondered if his parents resented the fact that my then 62 year old father was still going strong. But, they did get an extra year with their son and in a lifetime of 22 years, 12 months is a hell of a long time.