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Rheumatic Heart Disease Australia

RHD Australia

Five open heart surgeries: my personal journey with rheumatic heart disease

Eddie Masina’s journey with rheumatic heart disease (RHD) started when he was five years old.

“The morning was a typical morning. I woke up went and had breakfast, the next thing I knew I couldn’t feel my legs. I told mum, she came over, checked me, started freaking out, and then called the ambulance,” says Eddie.

Eddie was rushed to the nearest hospital in Cairns, 89 kilometres from his home in Innisfail and diagnosed with rheumatic fever.

“Being a kid, I didn’t know what that was. I thought to myself, oh maybe it’s just something in my legs. I thought maybe I can get better. When I went home my mum ended up telling me it was my heart. I didn’t actually figure out why. I didn’t understand,” he says.

Like many adolescents Eddie found adhering to his medication to be a difficult task.

“The only thing I really wanted to do was to get back to normal. I didn’t understand the disease. I just wanted to be like any normal kid.” 

At 12 years old Eddie had his first open heart surgery.

“In 1992 I caught the flu. I got rid of the flu but the sore throat and cough I couldn’t shake. My mum kept me home from school for a couple of weeks. I noticed my feet were getting swollen, I was short of breath, I couldn’t walk upstairs. I couldn’t do anything. So my mum and dad took me to the hospital,” he says.

“The doctors said I had an enlarged heart. They rushed me off to the Prince Charles Hospital in Brisbane where I had my first open heart surgery at the age of 12. Before the operation the nurses gave me sleeping tablets to relax. But I didn’t end up relaxed, I just ended up jumping around hypo. The doctors ended up putting a ring around my tricuspid heart valve.”

The operation was a success. After the operation Eddie went home and back to school.

“I thought I was fine. I played it off. That’s it I’m fixed. I didn’t look after myself,” says Eddie.

At 16 Eddie had his second open heart surgery. 

“After my first operation I continued going to my doctor appointments but I was neglecting to take my medicines. In 1996 my cardiologist did an echo on my and he noticed that aortic and mitral valve needed to be replaced. So in 1996 I had my second open heart surgery in the old Townsville general hospital and the operation was successful,” says Eddie.

At 18 Eddie suffered his first stroke.

“In 1998 I was 18 I suffered a stroke because I wasn’t taking my warfarin tablets. Being an 18-year-old. I wanted to just party with my mates, not really worrying about my health or anything like that,” he says.

At 20 Eddie suffered his second stroke.

“At 20 years old I suffered another stroke, again because I wasn’t taking my warfarin tablets. I was very lucky to survive those two strokes,” says Eddie.  

At 21 Eddie had his third open heart surgery.

“Because of the two strokes I suffered due not taking my medicines properly in 2001 I had to undergo my third open heart surgery. I had my third open heart surgery in Townsville,” says Eddie.  

“The nurses kept running into the room, they had the heart monitor on me, and saying “do you feel okay?”. I said yeah I feel fine. Next thing I know I woke up in ICU. I saw my sister at the end of my bed talking to my doctor. The doctor said my heart was racing at 200 beats per minute and there was no oxygen going to my brain. My sister stated crying, she didn’t know what to do. She rang my family to come to Townville to see me thinking this was my last day on earth, telling them all to come and see me.

“I started praying, I started getting scared, I started talking to the lord.

“The doctors managed to stop the blackouts and control my heart racing.

“That was the turning point in my life. I stopped the drinking. I started looking after myself. I started exercising. I started eating healthy.”

At 24 Eddie had his fourth open heart surgery.

“In 2004. My cardiologist did an echo. My cardiologist noticed there was a bit of a shadow around one of my heart valves. He said you might have to go for another open heart surgery. I was just devastated.”

“So in 2006 I had my fourth open heart surgery. I had it in Brisbane hospital because Townville hospital didn’t want anything to do with me having another operation (he says with a chuckle).”

The operation was successful. In 2007, Eddie moved to Townsville for work and study.

At 34 Eddie had his fifth open heart surgery.

“In 2009, I complained to my GP how fatigued I felt. So he asked me to do some tests. He looked at my results and told me that the mitral and aortic are causing turbulence and crushing on my red blood cells causing anaemia. Essentially he said I would have to go through another open heart surgery,” says Eddie.  

“I didn’t want to go through another one. So in 2013 I asked to my then girlfriend to marry me. With the love and support of my wife, family and friends is what helped me get through my fifth open heart surgery in 2014.”

Presenting at Queensland RHD Symposium and Education Workshop 2016 in February where there were 150 health workers, nurses, doctors, policy makers in attendance. Eddie found his throat swelling up as he finished his presentation.

“Years ago my mum told me that she had a sister who died from rheumatic fever at the age of 16. Just recently my brother has a daughter and it looks like she might have it now,” says Eddie.  

“I just want to see this disease ended.”