Saturday, September 30, 2023

“I’ll Never Be the Same” – What It’s Like Living With a Stranger’s Heart

An organ recipient’s journey isn’t over as soon as their donated lifeline is transplanted – what follows, as Nicky Pellegrino discovers, is a true uphill battle to reclaim the life they once lived.

Heidi and her husband Chris

Heidi Harty-Eugster has just turned 40. That is a milestone in anyone’s life, but for Heidi it has been especially significant.

“I wasn’t supposed to be here,” she explains. “I was meant to be six-feet under by now, so for me it was a big deal.”

Heidi lives in Christchurch. She works in banking, has a husband called Chris, an 11-year-old daughter Coco, loves dogs, and is pretty awesome. To meet her you would never guess how many times she has cheated death – or that she continues to do so.

Heidi was born with a genetic condition that causes the heart muscle to thicken so it can’t pump blood properly. Since childhood her life has been punctuated by open-heart surgeries and, in her 20s, she had a cardiac arrest while cycling to work. That led to a defibrillator being implanted in her chest to shock her heart into a normal rhythm. It bought her more time, but eventually Heidi was so sick that she couldn’t walk 50 metres or eat without getting breathless. She was dying.

A heart transplant in 2018 is the only reason that Heidi got to have that special birthday this month (June). She celebrated with a bouquet of 40 yellow roses to mark each year of her life, and two white roses in memory of her angel donor, the woman whose heart now beats in her chest. 

The birthday she wasn’t meant to have

I first met up with Heidi because I was researching my latest novel, Tiny Pieces of Us, which is about a group of people who, just like her, have been given a second chance at life thanks to a transplant. I wanted to know how that feels and so contacted her regularly during the writing of the book with all sorts of questions, some mundane and others very personal. Very generously she kept replying until eventually I realised that the media tends to tell a very one-dimensional story about organ transplants.

It’s not all happy-ever-after. Whether a patient has received a new heart, liver, kidney or lungs, there is a whole new story to be told about life post-transplant.

“The first year after surgery is all about recovery,” explains Heidi. “You’ve had major surgery, you’re alive and you’re on cloud nine. But it’s always going to be a journey. And the reality is you’re never going to be normal.” 

Twice a day for the rest of her life Heidi will have to take hard-core drugs to stop her body rejecting the heart that is keeping her alive, and those drugs can have a whole range of side effects.

“There’s the not sleeping, the shakes, the runs. And your personality changes, you’re manic and crazy, snapping at people,” says Heidi. 

A happy family now looking forward to the future

Appearance changes too – Modern Family star Sarah Hyland, who’s had a kidney transplant, has talked about having swollen cheeks, or “moon-face” from taking the steroid prednisone. Longer-term swallowing all those drugs can have more serious health effects. And with their immune systems suppressed by medication, transplant patients are vulnerable to infection, meaning the Covid crisis has been a particularly anxious time. 

“There was a lot of underlying stress during lockdown,” says Heidi. “I knew if I got it that would probably be the end of it, there’d be no hope.”

We may be at Level 1 now, but we still face so much uncertainty and that is taking a toll on many of us. Heidi has dealt with uncertainty almost every day of her life. I wanted to know how she copes.

“I focus on the things that I’m sure about,” she says. “I’ve got Coco and Chris, and they’re sure things in my life. I can get up and go to work everyday if I’m well enough. The uncertainty is always going to be there and I think it always has. So I don’t spend too long thinking about all those things that could happen; otherwise I’d never get out of bed. I just try to roll with it.”

Finding her own limitations has been important. Making sure she gets eight hours sleep a night, taking a sick day off work if she’s feeling ill, never overdoing it but still getting enough exercise. 

“If I’ve had a really bad day then I’ll go and get my nails done. I always feel better after that; I’m a whole new person.”

There is an emotional journey as well as a physical one. When she first returned to work, after 18 months break, Heidi felt like she didn’t belong.

“I’d had this major change in my life. People expected me to be the same, but I’m not. It took a good year for me to find my place in the world – this is what I’m like now, this is how I feel about things. I’m the same me, but a different me. It’s been an adjustment.”

Her donor is constantly in her thoughts, although there are strict rules round anonymity so Heidi only has the briefest details about her. For the first anniversary of the transplant she gathered friends to plant a small forest of native trees in her memory. This year, after the second anniversary, she plans to write a letter to be passed on to the family via donor services.

“I wanted to give it some time,” she explains. “It’s great that things are going well for me but they’ve lost someone and will still be grieving so it’s important to be sensitive to that. For the first year I couldn’t think of what I was going to write. How do you say thank you? I’ve probably got more of an idea now, but really all I can do is live the best life that I possibly can.”

No matter how careful transplant patients are, donor organs don’t last forever. A new heart might give you 10 years or more but there are no guarantees. Still Heidi says that for the first time in her life, she feels as if she can slow down and take a breath now. 

“Before I always felt like I was running out of time, but I’ve made it to the two-year mark, which is more than I thought I was going to have, so every year more is a bonus.”

*Tiny Pieces of Us by Nicky Pellegrino (Hachette, $34.99) is out now

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