DonateLife Week 2017

Emma was born with Cystic Fibrosis, an incurable genetic condition that primarily effects the lungs and digestive system. It causes a build-up of mucus and infections in the lungs – making everyday life very difficult.

Without new lungs, the 26-year-old’s outlook was bleak. But last year, Emma received the call that would change her life.

This is her story:

“I started seeing the team at The Alfred when I was 19 and at that stage, my lung function was at about 30 per cent. I met with them regularly over the years. I had numerous infections, lung bleeds and collapsed lungs.  When my lung function got down to 23 per cent, the team suggested it might be time for me to go on the wait list for a lung transplant.

I waited about a year and a half before I got the call. I remember it was a Saturday, about 10am. I was in shock, I told my family and they thought I was joking.

I had about an hour to get into the hospital, luckily I live quite close by. The surgery took 10 hours, which was a bit longer than planned. Afterwards, I went straight into ICU and was put on ECMO (an artificial heart/lung system that delivers oxygen into the blood). I stayed in ICU for 12 days, which wasn’t ideal (three days is the average ICU stay).

While I was in ICU, I had a lot of complications. I had two deep-vein thrombosis, one in each leg. I had a blood clot in my stomach and one in my heart.

Before I even woke up, I knew something was wrong. I couldn’t move my right side. When I did wake up, I couldn’t see – I was blind. It turned out I’d had five strokes.

It took probably two months for my eyesight to improve but the lungs were fabulous from day one. I didn’t have any issues with rejection or anything like that - I feel like they were the perfect match for me and it’s been smooth sailing ever since.

I didn’t actually realise how sick I was before the transplant. When you start breathing normally, you can’t remember what it was like being unable to breath. Until you have the transplant and you look back, you just don’t think about how hard it is. That’s the only way you can get through it and keep going.

Comparing how I was to how I am now is like comparing night and day. Before, just getting out of bed was exhausting. Having the transplant was literally life-changing. Even though I had all the complications, I wouldn’t change it for anything. And if I had to have another transplant, it would not be a difficult choice for me.

I have no words to describe how grateful I am to the donor and their family – they saved my life. For someone who is waiting for a transplant, you really don’t have any other options – there is no choice. So for someone to choose to give life through organ donation, that’s such an incredible gift. I realise how hard it must be for their family but while they’ve had a life taken from them, they’re giving life to someone else.  

This week, DonateLife Week, we are urging people to make their wishes known about donating their organs. Have the conversation with your family, let them know your wishes and make your decision count by registering online.

Join the Australian Organ Donor Register today.

Clare Healy has a very challenging but privileged role. As a Donation Specialist Nursing Coordinator at The Alfred, Clare supports families through one of the most difficult times in their lives – when their loved one is dying. Clare helps families understand the organ donation process and decide whether it’s the right journey for them. 

What’s the hardest part of what you do?

Being present when someone learns that the person dearest to them will not be coming home. I also find this part of the job a real privilege, to be invited into such an intimate family time is so special.

How do families deal with the process of donation?

Organ donation gives family members something positive to focus on during a time that is tragic. In my role at The Alfred, nine out of 10 families are supportive of donation when they know their loved one’s wishes. Registering your decision helps take away some of the pressure during a very stressful time.

What can people expect if their loved one is an organ donor?

To be supported through the whole process, by the ICU team that will continue to care for them, and the organ donation team whose role it is to advocate and support them.

How many people in Australia are registered to donate?

Only one in three Australians are registered to donate. Organ donation is a very rare event – roughly 500 people across the whole of Australia were organ donors last year and only 1 per cent of people who die in hospital have the opportunity to become organ donors.

How many organs do we need?

Therse are about 1400 people currently waiting for a transplant in Australia. The more people who are registered, the more potential transplants we can complete.

What are some of the reasons why don’t people donate?

Sometimes the circumstances surrounding a death are quite tragic and unexpected. It is our job to support families to make the right decision for them – sometimes donation isn’t a part of their journey. The best thing you can do is have the conversation with your family about your donation decision, while you can.

How can we get more people on the donor registry?

Australia is a world leader in transplant outcomes and Victoria is number one in the country for organ donation. However, there are still almost three times more people on the waiting list than there are organ donors. This DonateLife Week, we encourage people to make their decision count by joining the Australian Organ Donor Register and share this important information with their loved ones. Becoming an organ donor is the greatest gift you can give. 

Mark Macleod-Smith's life had been pretty normal up until his 40th birthday in 2010. After that, his health took a very serious turn. Now, Mark is thanking the organ donor who saved his life and urging others to consider joining the Donate Life register.

 I’d been to my GP quite a few times over three months with what felt like the flu. I ended up being sent for an echocardiogram, which showed that I was actually experiencing congestive heart failure. My heart function was only six per cent.

It was totally unexpected, but the medical team treating me in my hometown - Adelaide - hoped the heart failure could be repaired with medication and rest. Unfortunately, while I was still in hospital, I had a major heart attack – I was very lucky that the cardiologist treating me was able to perform an angiogram almost immediately. Right after that, my heart couldn’t beat on its own so I was connected to a balloon pump to keep my heart going. I was flown via Medivac to St Vincent’s ICU in Sydney.

It was six weeks before I could fly back home to my family in Adelaide – we didn’t know it at the time, but that was the start of a very long and often scary few years.

While in Sydney, I had an ICD (internal cardiac defibrillator) implanted as a precaution. I was told that the damage to my heart was likely irreversible, and I would need a transplant at some stage in the future.

It was a real challenge, trying to keep life as normal as possible for our two kids while I became more and more unwell. I went from being a very active bloke working full-time, mucking around with my boys, doing house renovations and gardening to not having the energy or strength to do much at all.

Because my heart wasn’t working well, it started to impact the rest of my body – my kidneys were struggling and I had to have my thyroid removed following a bad reaction to one of the heart medications.

It was after that surgery, in mid-2012, that I ended up with an infection that progressed into severe sepsis and total organ failure. The was pretty much the straw that broke the camel’s back for my heart – I was Medivaced interstate again, this time to The Alfred.

At that stage, I probably wouldn’t have survived heart transplant surgery, but The Alfred team was able to stabilise me to the point where I could have surgery for an artificial heart (LVAD – left ventricular assist device). We’ll always remember the date I had the LVAD surgery, as it was our eldest son’s birthday, and the first time my wife and I had been apart from either of the kids on their birthday.

We reckon that the successful surgery was a pretty good birthday present, as the LVAD ended up giving me time with my family I wouldn’t have had otherwise. The LVAD was a ‘bridge to transplant’, and meant that I had time to rebuild my strength after a pretty tough run. I was on an LVAD waiting for a donor heart for almost three years.

We moved to Melbourne to be close to The Alfred, and so we could be together as a family. It was a pretty tough wait, to be honest. I wasn’t able to work, and I needed someone around 24/7 as my condition could change pretty quickly. I found myself able to do less and less physically, and living with the LVAD was pretty restrictive. I think the first year of waiting for ‘the call’ was the hardest; after that, we just tried to get on with life and focus on what we could do rather than what we couldn’t.

But no matter how much you try to ‘get on with it’, the idea of ‘the call’ is always in the back of your mind – you keep your phone practically glued to your hand, and I was never more than two hours away from the hospital.

The irony is, the night my transplant coordinator called was probably the only night my phone was in another room – they actually ended up calling my wife’s phone, and it literally was the middle of the night. It just seemed surreal, and we didn’t want to get too excited as it’s pretty common to get some false alarms – donor heart not suitable etc. We got the kids up, and we all stayed together for the many hours of surgery preparation. I don’t remember any of that night, but have plenty of photos and stories from my family to reflect on.

I had a bit of a rough trot after the operation, and ended up being in ICU for a fair while. I do remember waking up and not remembering why I’d come into hospital, so that was a pretty awesome surprise to wake up and be told I’d had the heart transplant.

The transplant has meant we can work towards getting back to being a ‘normal’ family, and hopefully be able to relax and enjoy life. 

For me, the change has been huge – I’ve been able to return to work part-time, working as a tenancy coordinator supporting emergency housing for those at risk of homelessness. I’ve also been able to volunteer as an assistant coach for my youngest son’s footy club – it’s a pretty physical role which there was no way I could’ve done before transplant.

A lot of people think we’ve had a fair run of bad luck, but I’d say the opposite. I feel like I’ve been incredible lucky. It’s hard to express the gratitude I feel towards the many, many people that have saved my life multiple times, but my greatest thanks goes to my donor’s family. A decision they made on the hardest day of their life gave me the option to be with my family, and I’ll be forever grateful.

In 2004, Barbara Mortimer tragically lost her son Thomas and experienced first-hand the journey of organ donation. It was a journey that inspired her to study nursing, and brought her to work at The Alfred Emergency Department.

Barbara Mortimer was driving her 21-year-old son Thomas home from a medical appointment when he announced he’d like her to donate his organs if he didn’t need them nymore.

It was only a few weeks later that the conversation would become devastatingly relevant to Barb and her family. But it was a conversation that she was so grateful had taken place.

It was 2004 and Thomas was suffering from headaches and neck pain, which his mum put down to too much screen time at work. The GP sent him home, telling him to come back for a scan if the headache returned.

What the family didn’t know was the headache was the result of an aneurysm in Thomas’ brain. The next headache he had, the aneurysm ruptured and haemorrhaged.

Doctors managed to stop the bleed and saved Thomas’ life. But the family was thrown into turmoil when those doctors delivered shattering news – it was only a matter of time before the aneurysm ruptured again.

Barb and her family had three and a half more months with Thomas. As a mum, she remained positive throughout, thinking her strong, happy son would defy the odds.

But when the time came, Barb was grateful her son had made his wishes known about organ donation.

“For him to have initiated it was so brave, and at that moment when we had to come to terms with it, his words came back to me,” Barb said.

“Knowing that’s what he wanted made things easier. It was a long process but the staff were fantastic. I wanted somebody to stay with Thomas right through the operation and they did that, they were so respectful of our family and our pain.”

For months afterwards, Barb was too devastated to even leave the house. But knowing the organs had been successfully transplanted brought some relief. Finally, Thomas’ own words came back to her.

“He said, ‘we can either sook about it or we can get on with it’. So I got on with it,” Barb said.

She was so inspired by the incredible care her family had received throughout their journey, Barb decided to study nursing. Now, she works as a registered nurse in The Alfred Emergency Department.

“Keeping busy was good for me at the time. There were a lot of nurses who made a huge difference to me and I wanted to give back. Thomas gave back and I felt I needed to as well,” she said.

“Thomas’ donor co-ordinator, Sam, I will never forget her – she was incredible. I will never forget the people who were involved.”