Taking heart from others’ stories

Sri felt really scared when she was told her rheumatic heart disease and valve problems had led to heart failure. However, she's found that sharing her story and hearing how others have coped have been key to emotional wellbeing.

Sri first discovered a problem with her heart valves at the age of 18, when she was pregnant with her first child. At the time (1997) she was living with her Kiwi-born husband in Indonesia.

"The doctors were saying that one of the valves didn't open and close properly," Sri recalls. "I'd had rheumatic fever and that is what it was from."

The couple returned to New Zealand after their daughter was born, and Sri underwent heart surgery to replace the damaged valve.

The surgery went well and, with the help of heart medication, a healthy lifestyle and regular check-ups with her cardiologist, Sri's life continued as normal. "I was really stable. I was taking my medication and my diet was good. I wasn't smoking or drinking."

More heart problems begin

It was nearly two decades before Sri suffered any further difficulties with her heart. Then, three years ago (2016), problems began again after her husband had a stroke.

"With the burden on my shoulders of being his main carer, I became very stressed. I was rushed to hospital with heart palpitations. I was in and out three times."

With the help of medication things settled down until a few months ago, when she noticed she was struggling to breathe properly and unable to do things she used to be able to do.

"They admitted me to Auckland Hospital and they told me that fluid had started building up in my lungs. They told me I had heart failure," Sri explains. "It was really scary when I heard that. I never knew about what heart failure was, but I've done a lot of research and it's not as scary as I thought. Still scary, but not so scary."

The heart failure has, however, had a significant impact on her lifestyle.

"Before I got heart failure I was running my own shop, trying to get my husband to exercise, and I had a rental property to take care of. I was able to do everything — garden and everything. It was no problem.

"But now I just have to do things one at a time and try not to do too much.

"I don't have swollen legs or anything like that, I just can't breathe easily and it is hard to do much," Sri continues. "I'm still struggling to cope with everything, but I'm OK. For housework I get help from a carer who comes every fortnight to help me, so that makes things a bit easier. For everyday chores, I like breaking them up. So I do this one today and then I do one the next day. I break it up to portions that I can handle."

Heart condition impacts family

In recent years Sri's heart condition has had an impact on her relationship with family members.

"It has affected my daughter a lot," she says. "It's like she struggles to come to terms with this diagnosis because of my young age — I'm 40."

Meanwhile Sri continues to be the main carer for her husband, whose memory has been significantly affected by the stroke.

"My husband has lost his memory so he’s not so aware of my condition — he knows I have a heart problem, but he doesn't know the condition. He just forgets, he has a 50-second memory."

Even though she gets some help with his physical care, Sri continues to be his main emotional support.

"I'm closer to him now, but I think it is at a different level. I like it that way, knowing that people I love are happy, making sure they're OK."

Sharing your journey with heart disease

Sri has found comfort in reading about other people's journeys with heart disease on the Heart Foundation website.

"I like stories about what other people have been through. I learn from that, that actually I'm not alone, there are other people out there in the same situation who are willing to talk and share their story to help people."

She also has tips for others who find themselves on a similar journey. Firstly, she says it is important to look after your physical health by taking your medication and getting enough rest.

"It is easy to miss your medicine, but don’t do it. A blister pack is good so then you know exactly the day and the time you are taking it. And sleep! Sometimes when I stay up late to do things, then the next day I just don't know what I'm doing. So, try to sleep and rest with this condition.

Talking about your journey and staying positive are key to good emotional health, she adds.

"Try to talk about it and share with your friends. If you have a good friend, you can share with them.

"Stay positive and don’t think the worst. It’s like your life is this film you make in your head, so don't make a bad film, you don’t want to watch the horror movie in your head. Try to make a happy movie. It’s you watching, so make something beautiful to watch."

 

Shared Feburary 2020

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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6 Comments

  • Robert 29 August 2020

    I hope you are keeping well. I would like to encourage you. I had rheumatic fever as a child but managed to stay well until I got to 29. Then I was lucky enough to get a donor valve which s absolutely trouble free. Of course it wasn’t permanent and after 12
    And a half years it was replaced with an artificial mechanical valve. That was over 27 years ago! By taking medication as prescribed and looking after yourself, the prognosis is good although I developed tachycardia under extreme exerrcise when aged 54. They gave me an ICD (defibrillator) inserted in my left side of chest near shoulder. It is barely noticeable.
    One tip is “find out as much as you can about your condition and find out as much as you can about your medications and how they work”. You’ll keep better health and li e longer and well..I am nearing 70 and keep pretty good health. All the very best!

  • Willie 4 July 2020

    Thank you for sharing
    ❤️❤️❤️

  • Eve 17 April 2020

    I am new to this and your story is the first I have read. Thank you for sharing and confirming what I already know about our limitations

  • Merys 10 April 2020

    Go girl. You are on the right track, so keep going, and stay positive. Don’t worry, be happy.

  • Brian 8 April 2020

    Thanks for your story. Keep up the good work.

  • Tofia 4 March 2020

    Amazing story Sri. Love how you dont give up on life and you just take one step at a time. May God bless you eternally and watch over you and your family.