‘A heart transplant saved my life after I was misdiagnosed with asthma for 18 years’

Jul 30, 2019
DonateLife Week (July 28-August 4) is Australia's national awareness week to promote organ and tissue donation and get more people signed up as donors. (Stock Image) Source: Getty Images

I have always loved sport. I liked to play netball and squash when I was younger, but I was increasingly losing my breath. I would start off well but lose stamina.

Naturally, I went to my doctor to get some answers. I was diagnosed with sports induced asthma and prescribed an inhaler, but it did little to help my breathing.

I continued with my sport, even though I was often criticised for my lack of fitness.

I met my partner Mark in the early-1990s and we had our daughter Jessie in June 1992. My breathing was still an issue, but it became even more apparent during my second pregnancy with my son Jayden.

Pregnancy left me feeling out of breath, which I was used to, but when I laid down, I could hear a strange gurgling noise in my chest. When I contacted the hospital about it, they didn’t seem concerned. Thinking it was asthma, I was told a puff of the inhaler and an extra pillow would fix it.

When Jayden was only four days old and I was still in hospital, I experienced a dizzy spell, tingling in my left arm and had problems with my speech. The doctor came to my bedside, but wasn’t concerned. He simply said it was ‘baby blues’, which seemed like a far reach to me. At the time, we didn’t know what I had experienced, but I had in fact had my first mini-stroke.

Only two weeks later, while at the GP for Jayden, I mentioned the gurgling noises that were still happening in my chest. I had an X-ray of my chest and then an echo cardiograph the morning after.

I received a call that afternoon from the head of cardiology at the Royal Brisbane Hospital who told me I had an enlarged heart and would have to come into the hospital the next morning for further tests.

I asked about bringing my newborn baby with me because I was breastfeeding. They said in no uncertain terms that I would need to wean him off that weekend as the drugs I would be taking for my heart would make it impossible to breastfeed.

I was diagnosed with severe dilated cardiomyopathy and the gurgling noises in my chest were the late stages of heart failure. I felt deflated when I realised I had been misdiagnosed for 18 years.

During the testing I had another mini-stroke. Fortunately for this episode I was already in the hospital. I had speech problems for three days. It was a great relief that there were no long-term effects from this stroke.

After two weeks in hospital, I was sent to another hospital for a heart transplant assessment. The seriousness of my illness had suddenly come down upon me.

After more tests, Mark and I were told that a heart transplant was my only option. I was confused and shocked.

It was late October 1994 when I was added to the wait list for a heart transplant. It’s hard to believe it had only been six weeks since I’d given birth to our son. I was given a beeper and sent home to wait for a compatible donor.

My name was put high on the Australia-wide waiting list as a priority. I was told that I would have been lucky to survive another six months without the transplant.

That night, Mark asked me to marry him and of course, I said yes! We set the date for only a couple of months away.

In early December, after 44 days on the waiting list, I received a call to say my new heart was waiting. I was flooded with emotions: ambivalence, excitement for the future to come, fear of the seriousness of this surgery.

My procedure wasvery short and I had no complications. My new heart didn’t need to be started because it started beating all by itself.

It was a week later when I found out that my healthy aorta had kept my heart beating throughout my illness. Following my transplant, my aorta was given to a teenager in dire need of a valve replacement and it was a wonderful feeling knowing I could donate the best part of my old heart to someone else in need.

I recovered quickly. Within 24 hours I was up and walking and within a week I was out of the hospital.

Mark and I got married on the date we had set. We had our friends and family surrounding us. It was an amazing feeling to have been given a second chance to be with my husband and kids living a life I am truly grateful for.

During my six-month check-up, I was asked when I was going to go back to playing squash. I hadn’t yet considered it, but set up a game with my sister-in-law soon after and couldn’t believe how it felt to take deep breaths. I joined the local squash team, not sharing with them my transplant history until I was a comfortable part of the team.

Transplant Australia contacted me in 1997 and asked if I wanted to compete in the next World Transplant Games, which were being held in Sydney, Australia. I played squash at the games and won my first gold medal. It was the first of many medals to come as she competed in the Transplant Games around the world for a further 12 years.

Organ and tissue donation can affect anyone, at any age. I encourage everyone to become an organ and tissue donor and inform loved ones of your decision. Don’t ever let age become a barrier to donating either. People over the age of 80 have become organ and tissue donors! Without organ donation and the tremendous selflessness of my donor family I wouldn’t have had all of these amazing experiences.

Are you an organ and tissue donor? Have you discussed the decision with your loved ones?

DonateLife Week (July 28-August 4) is Australia’s national awareness week to promote organ and tissue donation and get more people signed up as donors. This year’s campaign urges existing registered donors to find a ‘plus one’ to sign up. If you have already registered, encourage a friend, family member or colleague to sign up. If every registered donor got just one other person signed up, the number of people on the register would double and more lives could be saved.

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