Evlyn Hossack

At the age of 25-years I became the youngest person in WA to have a heart and lung transplant – I count myself very lucky.
I am the youngest of four children and was born with a congenital heart defect, specifically patent ductus, trans-position of the main artery from the heart as well as a hole in my heart.
I kept telling Mum – it just happened, it wasn’t her fault.

I had my first operation at the age of nine months – a mustard operation (defined as a correction of abnormal blood circulation due to the transposed great arteries by creating an intra-arterial baffle that partitions the atrium and directs the pulmonary venous blood through the right ventricular opening and the systemic venous blood through the mitral valve into the left ventricle)
It was named after the man who invented it and I was one of the last people to have this type of operation. With the heart there is a big valve and a small valve, the big valve goes to the body and the small valve goes to the lungs. With me, they reversed it because of the high amount of pressure in my lungs. I was expected to have another operation when I was a teenager but it never happened.

As a child we lived in Bunbury for a while before returning to Perth when I was in year five. I was always puffed as a kid even from going walking. I think I stopped running in primary school. With sports I was always goalie because I couldn’t run around.
I went to Governor Stirling Senior High School, in Woodridge (West Midland) and studied hospitality, tourism and business in year 11 and 12 rather than doing my TEE. The vocational program was based at the school and I did lots of work experience. It was good.

I graduated, got a job and moved out of home with a friend. I had yearly check-ups with my cardiologist and my health was pretty good until I hit my twenties and I started going out, as all young people do!

We always thought it was my heart that was the problem until I was diagnosed with pulmonary hypertension in 2005, which is a lung condition. I had just come back from a holiday in America and I had flu-like symptoms. I went to my GP and was told I had childhood asthma – which just didn’t sound right. Three months later I went back because I had swelling in my abdomen, was throwing up all the time and could hardly walk five-metres without getting puffed. It wasn’t good. The doctor did an ECG and told me to get myself in to Royal Perth Hospital Emergency because my heart was failing. I had a million and one tests done – blood tests, x-rays, CT scans etc – because they had to rule out clots in my lungs from the air flight. Almost two days later I met Dr Eli Gabbay and was told I had pulmonary hypertension and I would need a heart and lung transplant. That was a bit of a shock!

I was told by my cardiologist years earlier that I may need an operation or even a transplant so I already had the idea in the back of my head. I never told mum this because I didn’t want to freak her out.

After being diagnosed with pulmonary hypertension I moved back in with Mum and Dad and was placed on the transplant waiting list and put on oxygen and medication. 

In May 2006 after six-months on the list I improved so was taken off the list and for about a year a half I did really well, even to the point they were going to take me off oxygen. I could walk around shopping centres without oxygen but would have it on at home. My little green hose would follow me around the house.

Then in September 2007 I got pneumonia and spent two and half weeks in hospital on 15litres of oxygen a minute and heaps of antibiotics and medication.
Take this pill, have this IV – I felt like a bit of a pin cushion.
When I got better they sent me home but I was actually sicker than I was when I was first diagnosed. I went home needing eight litres of oxygen compared to being on two litres before I got sick and the hospital gave me a wheel chair because I could hardly walk.

I wasn’t getting any better so was put back on the list in November 2007 and had to go through all the tests again... more tests and more tests!

In February 2008 I was given my pager. The waiting was tough cos I couldn’t go out anywhere by myself to go shopping and having someone push me in a wheelchair I just hated. It was a bit hard on mum and dad and I lost my patience quite a bit.
It was especially hard at first because I am such an independent person. Having someone do things for me and having to ask for help was difficult for me.  I couldn’t cook because I was on oxygen, so could be near the gas stove. I couldn’t do my washing or hang it out because lifting my arms was counted as cardio and I wasn’t supposed to raise my heart rate too much. But I could go to my friend’s houses and hang out but couldn’t be around people who had colds.

I remember exactly where I was when the pager went off. When I received it I was told it could be six months to two years before I would get a call. They were the longest six months ever. I thought it would never happen. People around me were getting transplanted and I was thrilled for them but there was still ‘I wish it was me’.

It was July 2008 and we were sitting down for dinner. I had the first piece of food on my fork and was about to put it in my mouth when my pager went off. Mum and my sister, Amy thought the smoke alarm had gone off. I put my fork down and was like “Oh my god, oh my god!” they said “What?” I said “They have got me a donor!” My sister started crying and mum was shaking. I had to ring Sharon the transplant nurse and she explained they had got me a donor and to come in to the hospital at 7pm.
We were expecting to get there and be waiting for hours but as soon as we got there they started with all the forms, I had a shower, the Registrar came in and said I would be going in at 9 o’clock. We all presumed he meant 9am but it was actually 9pm. My dad and brother-in-law hadn’t arrived at hospital yet cos they were out, so they had to rush so I could see them. Then I was put on the gurney and taken away.

My sense of feeling disappeared in the hospital, I think it was all too much. Even now I still haven’t expressed or come to terms with the emotions. I don’t know…
Amy was balling her eyes out and my brother-in-law said he could do the months of waiting for a donor but the moment they took me through the doors and they couldn’t go any further he said he could never do that again.

Apparently I said to the doctors and nurses “You are going to wake me up aren’t you?”
At the time Mum didn’t think I knew the full consequences of everything that was happening. I did know but I chose to look at the positives.
She said “Fight, fight hard!” and I said “Of course I will, I’m a fighter. I’m too stubborn to go anywhere.”

I remember going in to the surgery, lying there before they started putting lines in and everything. I was looking around and didn’t recognise anyone so I started crying. Then my nurse, Sharon came in and held my hand until I fell asleep.

The operation took eight hours, I was in the intensive care unit for three days and then spent two and half weeks in a ward before being sent home.

After transplant I couldn’t shower myself so mum had to help me. I remember saying “No! You’re not supposed to see me naked, you’re my mum.” That took a bit of getting used to as well as having to dress me because I couldn’t bend forward.
It took a couple of weeks and then I could dress myself and then a few more and could bend down to tie my shoes. She used to have to come a lift me out of bed. There was pain in my chest for a while after the operation and I couldn’t push myself up to get out of bed. I had to roll and she had to help me up. I used a phone to call her to help me. With the medication I was on I had to go to the toilet at 1am, 3am, 6am so poor mum had to drag herself out of bed to come down to the other end of the house to help me. It was pretty funny at times.

Mum and dad know how much I appreciate them. I tell them all the time. I owe them my life and thank them. Thanks also to the rest of my family, friends, nurses, doctors, physiotherapists, or ‘terrorists’ as they are called, for being there, for pushing me along, telling me I could do it and believing in me.

I know the heart and lungs that are now inside me are not my own. With the lungs, I feel like they have just given me something to make me be able to breathe, I don’t actually ‘feel’ any different. But I do have to re-learn how to breathe deeply. I have been shallow breathing for three years so it takes practice and I find that I yawn a lot.

With the heart, if it does something I really notice cos it’s not mine and I wonder what the different noises or movements mean. With my heart it used to tinker and tickle and I would know what the different signals meant like slow down, sit down or something.

The first time I went for a walk after being in a wheelchair for eight months was strange and I felt like I needed the oxygen. I was taking baby steps and basically had to re-learn how to stretch my legs out to walk. I walked in to a couple of walls, legs decided to go this way when the brain was saying go straight.

A lot of the re-learning is mental. I had been doing things a certain way for years and had to re-teach myself, yes I can breathe, yes I can walk. Another thing was when I started to walk because I was shallow breathing I would get puffed and think I need oxygen. I had to be reminded to take a deep breath in.

The painful thing after the operation was coughing. I held a pillow over my chest to help and I didn’t sneeze for two months – that was even more painful! I though I was going to rip myself open.

Physios at RPH have given me some timelines for being able to do things and gradual workout routines to build up my strength and fitness and make sure the scar and break in my ribs mend.

I take about 27 pills a day but it’s all worth it. I would rather take the pills and be alive and able to do things than be on oxygen and limited to a wheelchair.

As time goes on I will be able to do more and more things for myself, which I am really looking forward to. I can’t wait until I can drive again! Freedom is a big thing. To be able to jump in my car and just go – ah, I can’t wait.

I am also looking forward to learning how to surf, participating in the 2009 Transplant Games, getting a job and saving to travel.

Evlyn and friends at the 2008 Gala Ball