Anne

Congenital heart disease

Heart valve problems

‘I know my body best’

“You are just under a lot of stress at the moment” doctors said while prescribing antidepressants. Anne’s doctors’ primary focus was on her mental and emotional health, but she always believed there was something physically wrong with her health that everyone was missing.

Anne was raised on the sports field. Her parents met through hockey and softball. Anne’s dad—coach of the Hawke’s Bay Men’s Hockey team—would take her along to trainings in a baby carrier on his back. Here Anne participated in her first training sessions as her dad put players through their drills.

It wasn’t long before Anne was playing on those hockey fields herself, with friends and family often amazed by the likeness of her and her dad’s style of play. Anne naturally excelled in the sport, and at 16 she found herself in the New Zealand Māori hockey uniform facing off against Australia. It was a highlight, followed up with the honour of being awarded a scholarship to the United States as a student athlete.

In the States, fitness was the focus of hockey training. Anne had noticed her fitness waning before leaving New Zealand, but now it felt more pronounced and she noticed that her teammates responded to the fitness training better than she did.

“I undertook an intensive training regime in prep for the States. But two weeks before leaving I fell deathly ill and bedridden. On reflection, given the intensity of how I was training, and what was going on inside me, that was to be expected.

“I was a huge disappointment to the coach when it came to the initial testing. I knew I wasn’t making the grade, but come game time, I was still able to excel on the field and carry at least my fair share as a team member. But fitness was a constant struggle. I knew something was not right.

Getting to the bottom of it

Anne saw six doctors between New Zealand and the States, each, in turn, relegating her concerns to mental stress and depression.

“I agreed with them. I was studying for a degree in psychology and could understand how these types of things could be impacting on me, particularly given my full-on work hard, play hard, party harder lifestyle, but I knew there was something else, something deep in me happening…at my core.”

Some doctors listened to her heart to try and find an underlying reason for her fatigue, but they couldn’t hear anything abnormal. They would tell Anne she was “just under a lot of stress at the moment – being overseas, studying, and playing college sport” – a response she was getting frustrated with...

“Each time I heard this, another chip was made in my image of the ‘all-knowing doctors’. Yes, my mental health was under constant challenge; yes, I didn’t always rise to that challenge; but also YES there was something deeper, internal, at my core, something hōhonu, essential that was eating away at me. I knew there was, and that they were missing it.”

Anne returned home to New Zealand, and reluctantly accepted mental health as her defining challenge. When she returned to undertake post-graduate study at Victoria University, her antidepressant dosage had increased from 20mg a day to 80mg, all to no avail.

“There was still no relief from what I was feeling.”

Playing hockey under Ngāti Toa, Anne knew she was pushing herself through every game, she knew it was taking its toll on her body.

“My shin guards, they would feel like they were crushing my calf muscles. So, I’d play without them on, just in my socks, then the socks started to have the same feeling against my calf muscles. So I just rolled my socks down – not the safest, but on balance it kept me in the game.

“I was also getting very breathless. Each week I noticed it would take longer than normal to regain my breath after a short stint of exertion.” 

Eventually, she couldn’t make it up the steep terrace leading to her university, and reported this back to a doctor she’d started seeing on campus. “I was seeing her monthly, then three-weekly, then fortnightly, then weekly, and she was seeing how things were adding up and how I was deteriorating and that this wasn’t how a depressed person should be presenting.”

Anne told her that she knew something was wrong inside of her, especially in her chest area, and so the doctor decided to do a complete check-up. “She listened to my chest in different ways. When she had a stethoscope on and was listening really hard, she had a look about her that said she could hear something not right.

“She thought she could hear a heart murmur. She said it might be nothing but wanted to refer me to Cardiology to be sure – especially because by this point it was clear, something else was going on.”

That consultation was in March. Anne had to wait until August to be seen by Cardiology – an appointment that changed her life.

“The echocardiogram confirmed that I had a hole in my heart, which was a congenital problem. One of my valves was severely leaking and the other one was not bad, but not in good shape.”

While it’s not news anyone wants to hear, Anne says she was relieved to finally have a diagnosis.

“When I was given the news that I had a heart problem, I had this massive grin across my face. The student doctor was a little freaked out and looking to the cardiologist for help. He couldn’t understand why I was smiling. He didn’t realise that, to me, this diagnosis was vindication. I finally had my answer. I knew it. My deteriorating health was of something deep, internal, at my core. It was hōhonu, it was essential, it was my heart! I knew it! All along, on so many levels, I had known.”

Next steps 

After an angiogram showed her heart could be operated on, Anne was put on a one-to-three month waiting list and referred to Greenlane Hospital in Auckland. Though Anne wanted to use that wait time for her studies, she was instructed to reduce all stress lest she create a state where she would be inoperable. So she pulled out of university and moved back to Hawke’s Bay to live with her mum.

With her new diagnosis, Anne experienced such relief she stopped taking her antidepressants. The first couple of months were happy enough but as time ticked on Anne began to feel weaker, life leaching out of her. So she began conversations with her whānau and tīpuna for their strength and support. Despite all that support, she was soon feeling like a “ticking time-bomb”.

“I could feel my body starting to shut down, trying to have a shower was a huge task, eating a meal took forever and just getting out of bed and getting to the couch took a long time as I had so little energy. You never expect to be experiencing what I was going through at the age of 22,” she says.

“My mum was my rock and she was with me every step of the way. When I needed counselling, there wasn’t any funding available in the mainstream, so she went to the hapū and found some funding there.” 

That’s not all her mum did while Anne waited for surgery. It became apparent there was a month’s delay in the administration transfer of Anne’s case between Wellington and Auckland – concerning for Anne and her whānau given the one-to-three-month urgency. So Anne’s mum phoned the scheduling clerk in Auckland every week, to gently remind her that they could be in Auckland within hours should there be a cancellation. She found new and innovative reasons each week for making the call without sounding like she was “nagging”. And eventually her efforts paid off – there was a cancellation toward the end of a three-month wait.

Anne had her surgery – which included repairs to the AV canal and mitral valve with a tricuspid angioplasty and a T-ring insertion for a valve that had collapsed.

“When I came out of the operation, the doctors had something important to tell me about the surgery. I was already so incredibly weakened and just keeping myself tau, balanced, that I asked my family to hear the kōrero outside and tell me later. A month later it was shared with me that things had deteriorated faster than the cardiologists had expected. The hole in my heart had gotten bigger, the right chamber had blown up bigger, the semi-leaking valve was now severely leaking and the other valve had collapsed open. That’s when they told me that without surgery that day, I would’ve probably had only 48 hours left to live.”

The long road to recovery

Anne started her recovery with some gusto – wanting to get out of hospital and back home. She asked what she needed to do to make that possible and was advised she’d need to be able to walk a certain distance first.

“So I went for a long walk with my younger sister. I could see for her it was a funny balance of being scared seeing me learning to breathe and walk again, wanting to awhi me, but also keep me to the kaupapa of easy does it – my headstrong attitude was clearly pushing it. The next three days I ended up flat on my back. And that’s basically how my rehab went – too much, too quickly and paying for it in the end. But ALWAYS with unwavering whānau support.

“I ended up learning a lot of patience and I joined a cardiac rehab group, which was helpful to see where I was and to realise that everyone recovers at a different pace. The first time I showed up to group, the other members were looking at me funny, wondering why I was there. I was the youngest in the group by a good thirty years.”

Soon the group realised Anne was in the "zipper club" too and she was able to use her knowledge of fitness training to help some of the older people in the group. One day when the facilitator was not available, Anne was even asked to take the class, and although she declined the offer it did help build her confidence back up. 

Now, five years since her surgery in 2012, Anne is still in recovery. “I am still working with the cardiologist to see how I can improve my health, things just take time.” 

She’s used alternative treatments including acupuncture and homeopathy. “I believe that acupuncture helped a lot, I had huge doses of pain medication to take when I came out of the hospital, and I was still constantly lacking in energy. This is where the acupuncture helped to alleviate some of the tiredness,” she says.

“At first I found the scar terrifying, I looked like a cadaver after autopsy. Quickly though I owned it as part of who I was now. That mind shift was important.”

Anne’s mum encouraged her use of rongoā to improve the healing process and limit scarring.

“I had mixed feelings about that but could see this was important to her and knew I didn’t really have my head back on straight yet so trusted in her, good thing I did.”

Anne now proudly shows the nicely healed scar to the curious and plans to complete this healing journey with tā moko along the scar’s length.

Over the past five years, Anne has had to re-evaluate her goals and has subsequently looked to her Māori heritage for grounding—for a sense of identity and purpose—as her world changed.

“Not being able to do what I could have done in the past - it's been a huge identity shift for me. I now realise that I am no longer the athlete that I once was and have to learn to accept what I am able to do now. I’m a different person. And that’s okay. It’s just taking some time to realise acceptance. I lived and loved that life so much.

“I have had many counselling and psychotherapy sessions and at different stages I did look to suicide. I missed everything I used to be. I was grieving.”

With the help of her mum, sisters and other whānau members, life-long friends and uni friends, she survived the darkest days, but as a result of this journey she’s more discerning with her trust and maintains a high level of awareness when engaging with health services. 

“I did come out of the whole event with a lot of wariness of doctors, especially with seeing so many in the beginning and none of them being able to pinpoint what was wrong. It all comes down to self-advocacy. Doctors are people too and make mistakes. They can only work with the info you provide and each individual doctor will excel or not in helping you, depending on their use of the medical model and their own personal beliefs and way of being.

“It’s about owning our health and recognising our own power in that journey. I don’t just go to tohunga, doctors or practitioners and expect healing anymore. I go and ask for them to collaborate their expertise with mine as I seek better health and wellbeing.”

Anne now takes a more active role in not only her health decisions, but life decisions. In 2015, Anne was finally able to complete her honours degree in psychology. And though she was offered an opportunity to undertake a PhD, she decided to take a step back instead and put her health first. “I will do the PhD, but I want to do it when I feel ready, not be pushed through the pipeline.”

‘I’m the one who knows my body best’

“After everything,  I feel strongly that it is best not to look at our health system with a passive approach, but rather question what is going on,” says Anne. “And if something doesn’t feel right, then it probably isn’t, so keep questioning.”

Anne now maintains an extra level of vigilance regarding her health practitioners and their suggestions for her health and wellbeing.

“I realise I needed the heart surgery to fix my heart, but I value other models of health too. Some of the paths I have taken have not had the greatest outcomes, some have had side effects, and some have proven life-enhancing, transformative even, so it’s a matter of trial and error to see what works for me.”

Anne now works very hard to empower practitioners to answer all her questions fully, and in the best way they can, before embarking on any treatment, whatever the model of health is.

“It’s about understanding what the practitioner brings to the partnership and owning my power in my health journey. I feel like I am the best person to advocate for my health. I’m the one who knows my body best.”

Shared February 2017