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Wheezing leads to surprising heart diagnosis

Barry, now 75, had always been a keen sportsman in his youth and was not aware of any family members with a history of heart disease. After visiting his doctor he made a shocking discovery that meant he required heart surgery.

Father of five, Barry had an interesting career that always kept him busy and moving around the world.

“I was a cartographer for 57 years,” says Barry. “I studied in Holland, then moved back to New Zealand and later worked in the United Nations in New York.”

He taught himself graphic arts software after leaving the government and started his own mapping business from home in Greytown. He also teaches guitar and ukulele.

“I never really suffered from lack of breath when I was young,” he recalls. “I was an ardent soccer player and made it into the Wellington reps. Then later on when I was in the surf club and was swimming a lot and rowing the surf boat, I started to notice I was getting short of breath on the longer distances. I had a feeling something was going on, but I never knew why.”

Heart check and diagnosis

“When I was 69, I started having heavy wheezing sessions at night and found it hard to sleep,” he says. “I went to the doctor and had several courses of antibiotics, but they didn’t work so he said, ‘I think we are going to put you on the ECG.’”

As there were a few anomalies on the chart, Barry was referred to a cardiologist. 

“So off I went to Masterton hospital to get an echocardiogram,” he says, “and my cardiologist came out after and said, ‘Barry, you have heart failure.’ Well, you could have knocked me over with a feather! We have always had good hearts in my family – my grandmother lived to 85 and was as strong as an ox, so I thought my heart would be fine.”

Heart failure happens when your heart can’t pump blood or relax as well as it should. 

“I had an ejection fraction of 10.6%, whereas a normal heart is 50% to 70%,” he says. “I had a badly leaking aorta valve and the aorta root itself was about twice the diameter it should have been. It was a very dangerous condition as it could have ruptured at any time and then I would have died. It was a huge shock to me.”

Heart valve surgery and aftermath

Barry waited around 8 months to have open heart surgery to replace his diseased aorta and valve.

“I had a Bentall procedure,” he says, “where they remove part of your aorta and replace it with some sort of surgical piping then put in a new valve. They asked me if I wanted a pig or an artificial valve. I went with the pig as I didn’t want to have to take warfarin for the rest of my life.

“I bled out after my procedure, so they took me back in and had to patch up a few things. I was in surgery for a total of over 10 hours,” he says. “I also had 3 post-operative cardiac arrests after surgery. One while I was in intensive care and asleep. Another 4 days after my surgery, still in the ICU, just as my wife, Erin, was coming to visit me – she was walking down the ward and heard all the alarms going off. She practiced heart-math breathing exercises to relax herself as they were doing CPR on my chest. This whole episode was extremely painful and frightening. I also developed atrial fibrillation (AF) after my operation.

“I had an implantable cardioverter-defibrillator (ICD) implanted to help manage arrhythmia before I went home,” he says, “but I still became very anxious and couldn’t sleep. I was fearful of having another cardiac arrest.” 

Discharge, returning home and further complications

Barry recovered enough to the point where he could go home, but his journey wasn’t over.

“Three months after I came home, I had a very bad fever,” he says. “Then while I was sleeping, the ICD kicked in and threw me out of bed. Off I went to hospital again and the fantastic doctor got me onto antibiotics very quickly. The fever was caused by a staphylococci infection that went right through my body. They had to get rid of it but weren’t 100% sure what the source of the infection was.”

Doctors thought that swelling in Barry’s knee could have been the cause of the infection. 

“They planned to do an operation on my knee and so I was transferred to Wellington Hospital as the ICD had to be turned off during the operation. Luckily when I got there the swelling had gone down due to the antibiotics and I didn’t need the surgery on my knee anymore.”

Gratitude for life-extending medication

Barry is now on a reasonable amount of medication for the rest of his life after his ordeal, but he tends to look on the bright side. 

“It’s not a big deal really,” he says. “It’s just something you get used to doing. Now here I am celebrating 5 extra years of life – so it’s definitely been worth it. I consider myself extremely lucky – all my GPs and specialists read my history and are flabbergasted and tell me how lucky I am. We are very lucky to have an amazing system that can do all these operations for us.”

Finding support in the community

Barry also credits the amazing support he received with keeping his mind and body positive.

“After I got home there was a course at the local hospital on how to manage your condition through diet and exercise,” he says. “Then we were referred to a local support group and Erin ended up as the facilitator of the group as she is a counselor. This was a Heart Foundation support group, and it turned out really well for the time we were there.

“You could share and hear how people dealt with their own conditions and hear how they managed their anxiety, as that is one of the hardest things.”

Support from family and friends

Barry’s family and friends have been vital to his recovery as well.

“I am lucky to have a counselor for a wife who reminds me of being positive about the future and not to address negativity,” he says. “And this is even though I’ve had to give up a lot of things – I have always done physical work as a painter and renovation projects. Now I have been banned from painting roofs and I can’t run because I have arthritis. I don’t do much walking either, but I can bike. I have an electric bike which is great as you can switch it over to do most of the work for you.

“We make trips around the country to various trails and try to keep reasonably fit. But I guess I am just conscious of my condition now,” he says. “Though losing weight is something I also really need to do for my heart.”

Barry’s words of advice to others

Barry advises others to get their heart checked as you never know what’s around the corner.

“Since I had my op and cardiac arrests, I am much more aware of what is going on in my body,” he says. “If you think you feel abnormal, you need to look into it quickly. I also think we need more defibrillators around, as they are super important. And anyone who has a known heart condition – you, your family and friends must learn CPR.

“Most vital of all, you need to find a way to handle your anxiety,” he concludes. “For me it is having a busy life. Having contact with people is good so you don’t dwell on your condition. I go to sleep sometimes and have what you call a loud heartbeat. I worry something is wrong, but you don’t need to go to those places, you need to develop strategies to not do that.”

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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1 Comment

  • Claire 17 October 2023

    Thankyou for sharing your story Barry. The most important message that comes through for me is how vital it is to have a positive mindset in order to cope with the trauma associated with a very serious health condition.There is a real possibility of letting the condition rule your life because of the extreme anxiety you describe but with your determination and strong encouragement from your wife you have learnt to continue to have a full and rewarding life. Your story is very inspirational for anyone having to come to terms with living a compromised life due to chronic health issues. Once again thankyou for sharing your story.