Thursday, 10 November 2011

I Have Never Met the Person Who Gave Me My Greatest Gift

‘Don’t take your organs to heaven, heaven knows we need them here’.

So reads the sticker across the back window of my parents’ 4WD, where it’s been for more than 6 years now.

Ever since my Dad received a heart transplant.

He is one of the lucky ones, the ones who didn’t die while waiting on the organ donor list, or because they couldn’t afford the surgery (here in Australia this is a 100% government funded operation).

We never knew how sick Dad was until he was more or less listed for a transplant. We were aware he had cardiomyopathy but we had been left with the distinct impression that this was a manageable heart condition that wouldn’t affect his lifespan.

How wrong we were....

Five years after his diagnosis, Dad’s heart was so bad he couldn’t get out of bed without gasping for air. It just couldn’t pump the oxygen around his body. Since we were unhappy with the management by his current doctor, we sought a second opinion.

Needless to say we were rather shocked when the new doctor told us that 50% of sufferers are dead five years after diagnosis and most of the rest in another five years after that. That fast, Dad went from a manageable heart condition to being dead in five years.

My Dad couldn’t die in five years. I wasn’t even married yet, I’d be lucky if I had children in five years. I didn’t want my children to miss out on their grandfather and I didn’t want Dad to miss out on my children either. There were so many things I’d lose – he’s the one I ride horses with, the one I share my Wheel of Time theories with. A girl needs her Dad. And in five years, there wasn’t much chance I was going to have yet published a book. Indeed, that was 1 year ago now. And I don’t have a published book (due, at least in part, to the fact I haven’t even tried).

The doctor told us that at this stage there wasn’t anything more that could be done with drugs. Dad’s only possible option was a heart transplant.

Despite not being sure he wanted to take that step, Dad went off to see the transplant team at St Vincent’s hospital in Sydney. Shockingly, the doctor there told him he was a walking heart attack waiting to happen and promptly admitted him to hospital. While he was there, they ran the tests to see if he was eligible to be listed on the transplant list. You have to meet certain criteria you see. There’s not much point in giving a donor heart to someone who either isn’t healthy enough to recover from the surgery or who is dying from something else. Things like drug abuse also tend to disqualify you.

I was engaged to be married in a few months time. Ten days before my wedding, Dad was officially listed on the transplant recipient list. We were told that the average wait was 6 months to 4 years, though some people wait longer. Some people don’t survive their wait.

So we idly discussed what we’d do if Dad received a donor heart before my wedding – but it wasn’t going to happen, so it didn’t matter.

Dad and I, 8 days after his heart transplant
Thirty-six hours later Mum wakes me up at 1am to tell me the hospital has a heart. They live an hour away and I’m virtually around the corner, so I tell them I’ll meet them at the hospital. My brother has his boys for the night, so we tell him we’ll call him when we know for sure what is happening. The hospital routinely calls two or three potential candidates to do cross-matching tests and then gives the organ to the best matched recipient, so we didn’t know for sure anything would happen.

We waited around at the hospital for a few hours. Another family came in, with a daughter I suspected was had cystic fibrosis, and therefore probably a potential recipient of the lungs. Did you know that one person’s decision to donate their organs can save the lives of up to ten people and improve the lives of more? That’s without counting their friends and family. Heart and lung transplants are done at St Vincent’s in Sydney, other organs at other hospital around the city.

We waited for someone to tell us if Dad was getting the heart but it wasn’t until they wheeled Dad off for surgery that we knew for sure. It was so sudden there was no time to call my brother.

My fiancĂ© came to pick Mum and I up and take us back to my apartment. Mum called my brother on the way. He headed over immediately, so we all got about an hour’s sleep before he arrived and had us up for breakfast. Exhausted and worried we headed back to the hospital for another five hour wait, including one heart-stopping moment when alarms went off and nurses skidded down vinyl-floored halls in alarm. Whoever they were responding to, it wasn’t Dad.

Mum had a book the hospital had given her, called ‘the purple book’. The first half is about being listed for a transplant and coping with the wait. The second half is about post-transplant issues. None of us ion my family have read the first half of that book. We were lucky not to have to experience the fear and anxiety that so many families endure while waiting for loved ones to receive organs. But the go to whoa experience sure was one hell of a rollercoaster ride.

The carriage that drove Dad and I to my first wedding
Dad was still in hospital the day I got married but he was well enough to be allowed out on day release. My uncle drove into the city to pick him up while we all got ready and brought him back to my parents’ house. Dad got to ride in the horse and carriage with me and he was there to walk me down the aisle.

The marriage didn’t last but the memories of Dad are something I’ll have for a lifetime.

Dad took his second chance rather seriously. He did a few things he wanted to do, like flying in a seaplane and piloting a helicopter. He’s lived to walk me down the aisle a second time and he’s seen his only granddaughter born. He’s going well enough there’s no reason he won’t live to see my second child born.

I’ve promised to take him to Scotland, where he was born. He’s never seen it since he left when he was two. I have and I want to share it with him. There’s just something about Scotland that feels like home. It’s like you can feel your ancestors in the bones of the hills there. I won’t be able to go back for a few years owing to small children and Dad worried he might not make it, though right now there’s no reason to believe he won’t. I promised him if he didn’t I’d scatter his ashes in the highlands. I have no idea what the customs regulations are around that and hopefully I’ll never need to find out, but... promise made.

Dad and I, at my second wedding
Not enough people donate their organs. Too many families overrule the wishes of their loved ones and refuse to donate organs, even though it’s what that person wanted. More people just never think about the importance of organ donation or don’t think to tell their families what they want. When I told my colleagues Dad needed a heart transplant, one of them when home and immediately registered herself as an organ donor. People don’t think about organ donation, but when they do, they realise its importance. I’m an organ donor. Are you?

Don’t take your organs to heaven. You can’t use them there. More than ten people here can. You can change more lives than just those of the organ recipients.

I never met the person who gave my Dad his heart. I never can, since they died to give me this gift. I never met their family, who cared enough to make this gift to people they didn’t know and would never meet. I am grateful to them, more than words can ever say. If you have a loved one who donated their organs in Sydney, Australia, in 2005, it might be you I’m grateful to. 

Be an organ donor. You could be giving someone like me the greatest gift possible.

The gift of a father. The gift of life.


Mhairi Simpson said...

I'm a donor. Down for everything, up to and including my skin. As you say, I can't take it with me. Your post made me tear up. I'm so glad you got to hold on to your Dad. He looks great! And you look beautiful too :D

R.S. Guthrie said...

Great post, Ciara. I am truly happy for you and your dad (and I just signed up as a donor a month or so ago when I renewed my license. Cheers!

Libithina said...

wonderful, post, I suffer from heart failure so I can relate, so very happy for you and your Dad x Lib

Ciara Ballintyne said...

I'm down to donate everything too! Although I did know a guy who was a donor for everything except skin because he thought it was a bit gross... Funny the way people's minds work.

Ciara Ballintyne said...

Thank you! Good on you for choosing to be a donor.

Ciara Ballintyne said...

Thank you. So sorry to hear about your condition. It is a very difficult situation.

Raine Thomas said...

A beautiful post, Ciara! As you might have seen on my last blog post, it's because of your dad's story that I'm donating 5% of all of my book sales in November to HelpHopeLive, which provides financial assistance to transplant patients. Thank you for bringing this topic to the forefront. You're helping to save lives!

Sarah said...

What a post. I'm all kinda soggy now.....
Yup, I'm on the register here in the UK, and my kids are too. If a part of us can be used after we're gone then I'm all for giving even through death. Unfortunately, as a transfusion recipient I am unable to give blood, but my gratitude to the people who do, and did to save my life 3 years ago, is huge.

Jessica Brown said...

Fantastic, beautifully put. How marvelous that the operation is state-funded in Oz, I wish the US would wake up. I have been an organ donor ever since I was old enough to say so, which in the US is basically when you get your driver's license at 16. My husband knows that when I died that my organs and whatever else anyone needs are theirs...though no one would want my horrible eyes! I am so glad your dad lived to be there for your beautiful day. Thanks for sharing your story.

Elena Gray said...

Ciara I am so glad that your father is doing well! And I am proud to say that I am an organ donor.

Christina Majaski said...

What a great reminder...that our organs are of no use in heaven. I'm so glad your dad is doing well. Beautiful photos of you both, by the way.

Ciara Ballintyne said...

Thanks Raine, I was delighted to read your announcement that you would be donating to this cause!

Ciara Ballintyne said...

I have been meaning to want to donate, but first I had a tattoo (my eyebrows, no one get excited) and you can't donate for 12 months after that, then I was pregnant etc. I still haven't made it there, but I did the smart thing this time and had me eyebrows redone just before I get pregnant again, so by the time my pregnancy is over, my 12 month exclusion period should be over and I can go donate. It's great you are donating what you can!

Ciara Ballintyne said...

Thank you for taking the time to read it! You might be surprised who would want your eyes! Apparently they even took valves from Dad's old heart to donate to other people. A cornea that works a bit is better than one that doesn't work at all.

I agree it should be State fund in the U.S., I can't believe it's not. So sad when I read stories about people trying to raise funding.

Ciara Ballintyne said...

We can be proud together! Dad is doing really well, hasn't even been hospitalised since 2006.

Ciara Ballintyne said...

I wish I could take credit for that quote! Thank you :-)

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