• Lizzie Small

For Me, The organ donation process turned into a Marathon of Hope.

Updated: Aug 27, 2020

Do you have a little black heart on your Driver’s Licence?

What does Organ Donation look like to you? I can tell you what it looked like to me.

I registered years and years ago. It was completely painless, and until nearly three years ago I had completely forgotten I had ever done it. At the time of doing it, I had this whimsical idea that by agreeing to be an organ donor, I could expect that my body could be useful to others when I died. It was an altruistic pledge. It was a declaration that I was a “good” person, prepared to gift bits of my body to others who needed it when I was gone. The details, however, escaped me.

Now, here’s the catch folks. I’m afraid that the altruistic act I thought I was performing was a fairytale (and remains one!) There is no sugar coating this. If you are an Organ Donor, you are agreeing that in the case of your body no longer being able to support life (but is still breathing).ie you are brain dead) THEN… and only then can your gift be harvested and received by others* I’m sorry but that is the bad news.

But here is the good news: For a start, I had no idea that with ONE life, you can save or make life better for so many! One donor can potentially save 8 lives and could further improve the lives of up to another 75 more, through tissue donations. That’s over 80 people!

Had I known all this, I’d have felt even better about the little black heart emblazoned on my Driver’s Licence. But I would still have been blissfully in the dark about the process -

And then I found out the hardest way possible what Organ Donation REALLY meant.

Before I tell my story, it’s important to know that a staggering 90% of Canadians think being an Organ Donor is a great idea. Why then are only 23% of us actually registered? Of that 23% very very very few of them will actually go on to become organ or tissue donors (see above!)*

Bearing in mind around 250 people die every year waiting for a life saving transplant, you can see why that number would be impacted hugely if all 90% of us, actually took the 2 minutes it takes to register for that little black heart. Oh and here’s another fact: You are 6 times more likely to need an organ transplant than to actually become a donor.

Being part of the process of ‘enabling’ the Organ Donation to actually happen was the single most liberating, most generous, and the kindest act I could have been a party to. AND. It literally has saved my mental health and given me the strength and fortitude to pick up the pieces and move forward. (maybe, I ought to point out these were not MY organs and that this story is not about me!)

I was at the sharp end … where it all happens, where I would have given a thousand lifetimes to NOT be. But, in the realization that my partner had signed the form and agreed to be an Organ Donor, the blackest days of my life, turned into a marathon of hope and of reclamation and of love. And I am so, so, so grateful that his gift of Organ Donation saved me from what would otherwise have probably killed my spirit completely.

Never, ever, EVER, in my wildest, darkest, most horrific nightmares could I have imagined ThanksGiving Monday 2017, turning into the day (s) it did. My husband of 20 years (just) was rushed to hospital with the shadow of a pulse, having chosen to try to end his life. This is not something I find easy to write about. He was a strong man. He was a good man. He was in pain - and he couldn't (I guess- there was no note) cope with living in pain any longer. His attempts to dull the pain had recently become extreme - turning to the worst kind of street confection, which drained his soul, robbed his personality and his will to fight. It was tragic, and horrible and bone chillingly terrible. It came without (much) warning. And his act came out of the blue. NEVER ever, ever in my (I think I said that already) would I have pictured his end this way. Just NEVER. (Dave’s route to being brain dead was particularly sad, but had he been brain injured in a motorbike accident- the process would have been identical)

Please indulge me here, because I owe such a huge debt of overwhelming thanks for the gentle kindness shown to us that morning by the emergency services -The team from the Calgary Police Service and EMS who held us both in their competent presence. They tempered the horror of our discovery, and gently explained that where we had seen certain death; there was a glimmer of hope, and set about getting him to the hospital to fight for his life.

David was rushed by ambulance to Foothills Hospital in Calgary, We (my 18 year old daughter and I) followed close behind, driven in a Police cruiser designed for those destined for the remand centre. ( Bars on the windows and hard plastic boxes for seats with ZERO room for your legs, and neither of us is over 5’2”). On the way to the hospital in shock, I held an entirely pointless conversation with the two officers. I spoke to them like they were taxi drivers taking me to some happy family gathering. I remember that conversation as if it happened yesterday. Just before being bundled into the police car a female colleague thrust an egg into my hand from a bowl on my kitchen counter - urging me to take it to eat so I had strength for the rest of the day. I pointed out to her the egg was RAW not boiled and somehow in the midst of all that calamity- we both laughed out loud.

The next bit was awful. I’ll spare you the details except to mention that it was established that Dave was beyond retrieval, after 4 cardiac arrests on the way to hospital. The medical staff were amazing. Without exception. And then - there it was. In the melee of shock and sadness and our lives being eviscerated before our eyes. Came the statement:. “Mrs Small I see your husband is registered as an Organ Donor”.

Like Michaelangelo’s Hand of God, on the Sistine Chapel ceiling, I could see the spark of light - and a way of helping Dave do what I KNOW he (in his right mind) would have done.

We were taken to ICU and introduced to the most incredible people I have ever met. The transplant team and the ICU nurses. And then I met my new best friend for the next 48 hours. Carey, from the Alberta Organ Donation Program. She spent the ensuing hours with me, asking me more questions than I have ever answered in my life. In those moments when I wanted to know why they needed such minute details of his life, she was patient, she explained, she comforted and she held me together. At NO time did I ever ever feel pressured to make a decision I didn’t want to. At every step of the way, she was there for me when I faltered or got frustrated or angry or just plain upset. Somehow through the fog of horror, she and her team made us feel so cherished and valued. They gave us strength and they treated us as if we were conquering heroes without the ticker tape parade. They basically made us feel whole again gave us purpose when in fact we were in shreds.

In David’s case (and this is a testament to the intense research they HAVE to do into each donor while they are still clinging to life), our long long interviews revealed the fact that we had married and lived in England for 8 years. This was pertinent because it meant that there were parts of his body, which had he NOT lived in England, he would have been able to donate to others who needed them .. but sadly, having lived there through the Mad Cow crisis had rendered him ineligible to donate skin and tissue or blood. His heart had been damaged beyond repair and his lungs were too big for the Cystic Fibrosis patients on the transplant lists. His liver was slightly suspect with a small nodule which understandably they didn’t want to risk. But, his kidneys were champions. Healthy, vital and fully operational and perfect for the purposes of transplanting into two patients whose lives were saved by his gift.

The team was there with us until the bitter end; helping us make tough decisions and allowing us every moment we needed to feel right about our way forward. I make no apologies for us both spending special time with him alone to whisper our farewells and to hold his hands. This before the teams of technicians and doctors and nurses had to perform the final act of taking him off life support and making the necessary arrangements for him to be taken to another place both literally and metaphorically. Our farewell was dignified and filled with love and the transplant and ICU team went to great lengths to ensure that that final farewell was exactly as WE wanted it.

What does Organ Donation look like to me now? Why share my story of pain and suffering ?

Organ Donation is the greatest gift you can give of yourself when you are no longer in a position to make those decisions. From my experience it is the best gift you can give your loved ones too. Knowing that the decision taken was honourable and kind, and that you have HELPED others when you could no longer help yourself is, I promise you, a gift to them too.

If you were ever in any doubt about registering to donate your organs in the event of your body not being able to support life any longer, then please, please consider it now. It is a kindness to your loved ones and to those you will ultimately help. But Please, please please discuss it with them,so that they can give their blessing when and if the time ever comes; knowing it was what YOU wanted.

I cannot begin to express my gratitude for our joint decision years ago - altruistic or not, to both become organ donors. I am so fiercely proud of David and his gift and I wear it like a badge of honour.

To register: And tell your loved ones of your decision! That is most important!

I will proudly wave the banners, and beat the drums in advocacy of Organ Donation and am passionate about telling my story to help others.

My name is Liz Small and with my daughter Chloe, we live in Calgary, Alberta. Si

nce Dave’s death, we have been planning the launch of the company he wanted to start - a Food Truck Called SouperSpudz, serving locally grown stuffed baked potatoes. May 2020