Growing Up When Your Mum Has Cystic Fibrosis. Part 2

In Part 1, I mentioned my surprise that Jarryn had picked up on the significance of the word ‘hospital’ with regards to my Cystic Fibrosis and accepted my various treatments as just another part of life.

For me, the revelation in the second part of this interview was the extent of his compassion. I’ve always been aware that Jarryn had a compassionate nature as  he’d always been very patient and considerate of our elderly Gran, however, I was too close to see that his compassion also extended to me.

Did you notice anything different before your Mum told you she was going on the transplant list?

The first thing I noticed was that Mum had been doing IV’s for ages. She didn’t seem to be any better than before she had started them, then she went into hospital, which I knew she didn’t like, (the last time was three years ago when she’d had a bleed, she preferred to do all her treatments at home).

When she came home from hospital, she brought an oxygen concentrator with her. That had never happened before. Even though she only needed oxygen at night, it worried me. I also noticed that she didn’t seem to walk as fast as before and she was getting very puffy when she talked.

But what concerned me most is how Monkey (our dog) started being protective of Mum and following her around like a shadow. Monkey knew something was wrong.mum-and-monkey

How did you feel when your Mum told you she was going on the transplant list?

A mix of being both worried and relieved.

I was worried that she might die, but at the same time, I was relieved that there was something that could be done to make her better.

You moved to Sydney to live with your Dad a few months after your Mum was listed on the transplant list.
Was that a hard decision to make?
And what factored into your decision?

Mum told me that it didn’t matter if I stayed in Perth or if I moved to Sydney. Either she would be a match for a set of donated lungs or she wouldn’t. My physical location wasn’t going to change that outcome.

After that, I thought about all the things I was doing to help her, going to the shops and the library and I worried a bit how she would cope once I was gone. Then I realised how much she was still doing for me and I figured there would be less shopping and less for her to worry if she didn’t have to look after me. I knew it would be easier for Grant too, then he’d only have to worry about looking after Mum.

I also thought about when my Pop had died. We’d seen him a few weeks beforehand, but when the call came for us to go to the hospital to say goodbye, Mum decided not to go. She said she wanted to remember him the way he had been. I thought about that a lot and figured Mum would probably want me to remember her the way she was and not watch her getting sicker.

Once I’d thought about all these things, the decision to move over east to live with Dad was easy.
I knew it was the right thing to do.
But it was still hard to leave.

You came back for the next school holidays. How did you feel?

Mum was really sick. She was on oxygen all the time and she was also using the BiPap a lot. She could barely walk or talk. Monkey was super protective.
This time when I left I was really really worried.

And it was a lot harder to get on the plane at the end of the holidays.

with-mum-2011
Part 3 Covers Jaryn’s feeling on the day he received the phone call telling him I was going into surgery. 

2016 DonateLife WA Honour Ceremony

This special ceremony honours those people, and their families, who made the decision to donate their organs at a time of great loss. My gratitude and respect, not only for those involved in the decision that resulted in my transplant, but for all the families who have said yes, cannot be put into words. I was honoured to be asked to participate in this special ceremony on Sunday night.

Donate Life, Service of Remembrance 2016

Donate Life, Service of Remembrance 2016

I usually speak to students about my journey, and my presentations are very visual. Each presentation is always different, often lead by the questions that curious young minds ask. Speaking to over 600 people who had found the selflessness to think of others and consented to organ donation, was a hugely humbling experience.

It was an opportunity, not to educate or inform, but to give thanks to these families and a chance to explain how my life was changed by a decision such as theirs.

 

With my wonderful Pop, 1975

With my wonderful Pop, 1975

In my lifelong battle with Cystic Fibrosis, even my earliest memories revolve around endless medications, nebulisers and the dreaded twice daily physio. In the final months before my transplant, I was literally clinging to life by my fingernails, somehow making do with a scant .37 litre lung function.

With my son, Jarryn and my loyal Monkey Dog , January 2011

A transplant isn’t a cure it’s a trade, but what a wonderful trade it has been for me. There is a very simple pleasure in waking up and knowing that I can take a deep pain-free breath without struggling, a joy knowing that each breath will be followed by another, and another – because these wonderful lungs do what they were meant do, naturally and without effort.

My transplant was more than a second chance, it’s allowed me to realise my potential and achieve goals I could only dream about before, only made possible because someone had the generosity to say “yes” to organ donation.

Sun Setting over the 2016 Ceremony. Photo credit Georgia

Sun Setting over the 2016 Ceremony.
Photo credit Georgia

I’ve not had the opportunity to speak to my donor’s family, however Sunday night was an opportunity to express my gratitude in a different way.

“The gift that results in a transplant is between strangers, but it is also a deeply personal gift, which makes the words thank you seem a little inadequate. It’s more than a physical gift – it also carries the opportunity to have a future, a second chance.

I will never meet or know the person who gave me this second chance, but I think about them every day.

So, to their family I would say, you made an important decision, one that made a great difference to my life and the best way I can show my gratitude is to take the best care of these wonderful lungs that you entrusted me with, to live life well and to the full.”

 

With Anna and Greg earlier in the day for our media interviews.

With Anna and Greg earlier in the day for our media interviews.