Tatiana's Story

By all accounts, I shouldn’t be here. When I was a child, doctors told my parents I wouldn’t make it past my teens. Then, at 43, I was given just 12 months to live. I’m happy to say, I proved everyone wrong!

I was born with a rare heart defect known as Truncus Arteriosus. It meant I had one large blood vessel leading out of my heart, rather than two separate vessels. Instead of oxygen-poor blood going to my lungs and oxygen-rich blood going to the rest of my body, it all got mixed together. My oxygen levels were always really low – about 65% when they should have been something like 97 or 98%.

They found out about my condition when I was a few weeks old. I got a cold, and when it didn’t clear up, my doctor suspected I might have a problem with my heart. Back in those days there weren’t any MRIs or Ultrasounds, but they did an angiogram with a camera and diagnosed a hole in the heart. There was nothing they could do to help me. They told my parents I probably wouldn’t make it past 17 or 18.

Instead of celebrating my birthday each year, they were probably dreading it. For them, it was just another year closer to losing their daughter. As a kid, I was never very energetic. I missed a lot of school too. If I got a chest infection, I’d be off for weeks whereas other kids would fight it off in a few days. But education was very important to my parents, my dad especially. I remember my parents bringing me reams of homework from school! They made sure I didn’t fall behind.

Growing up I knew I was different, but my parents never told me how serious my condition was.

In my mind, everything was a challenge, but I was a survivor.

I get my positivity and strong sense of survival from my Dad. He was Polish and came to Australia as a displaced person after the war. Both my parents always fought hard for me. When I was first diagnosed, Dad sent my medical files to the USA and to the then USSR asking if they had any techniques that could help his little girl. But no-one was doing that kind of surgery on young children. I’m amazed when I think how far heart and lung treatments have progressed since I was a child.

Babies born with my condition today can have corrective surgery when they’re only a few weeks old. And it’s all thanks to research funded by member of the community.

It was always in the back of my mind that I might need a transplant. But, as I got older, things got a bit easier. Even though I still had limited energy, I was definitely healthier and wasn’t getting sick as often. I was in my 30s when I met my husband Stephan. He is from Germany and we moved over there to live for a few years. I loved it, but the climate was terrible for me. I remember someone asked, “Why is Tatiana so blue?”. My fingernails were purple, and my nose and cheeks were always blue.

It was normal for me, but obviously my heart was really struggling.

We moved back to Perth and that’s when my Cardiologist told me my heart was tiring. My lungs were also extensively damaged from Pulmonary Hypertension.

Hearing the words ‘Heart Failure’ and “Advanced Lung Disease’ was scary. I began to wonder if I really stood any chance of getting through this.

I first went on the transplant list in 2005. There were a couple of false starts when I developed a severe allergic reaction to a drug and then had problems with my kidneys. Being on the list is such a balancing act. You need to be sick enough to need a transplant, but well enough to have the operation and get through recovery.

Then finally, in May 2007, I got the call that changed my life.

The surgery was long, and recovery was hard, but I had Stephan with me all the way. I knew I’d been given another chance at life. I also felt extremely grateful to the person who had given me this amazing gift. For some reason, I felt like I had been given the organs of a male. A few years later, I had the chance opportunity to meet my donor’s family. It was very emotional, but we’ve since formed a very tight bond. We have become loved members of each other’s family.

When I look back on everything I’ve been through, I feel extremely lucky to have lived the life I have. I was nearly 45 when I had my operation. There are only a handful of people like me who have lived with that heart condition and then gone on to have a heart and lung transplant without any corrective surgery in between.

Without research none of this would be possible and I wouldn’t be here today.

My dad always loved reading Science Fiction magazines. He used to wonder whether heart and lung transplants would be possible in the future. Sadly, he didn’t live long enough to see me have my operation, but he would have been amazed at how far we have progressed in such a short time. My mum still maintains it’s “better than a dream come true”.

Heart and Lung research has given me another chance at life. “

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