In November 2017 a gift from a complete stranger transformed the lives of the Hurley family of Ashburton, when Melissa Hurley underwent a heart transplant operation. It’s been a life changing experience for the whole family. Mum, Jane Hurley, shares their journey.
Melissa was first diagnosed with hypertrophic cardiomyopathy (HCM) — a type of heart muscle disease — when she was in her mid-twenties. It is one of the more common cardiac inherited diseases with the at-risk genes occurring in approximately one in 500 people. This disease makes the heart walls thicken and consequently stiff, so the heart has to work harder to pump.
Melissa’s initial symptoms were shortness of breath on exertion and after a cardiology assessment at that time they were told the diagnosis and the only information we were given was that Melissa’s heart was like that of someone who had had high blood pressure for many year and with that life went on.
Whilst doing further study in cardiology a couple of years later, HCM was discussed and Jane mentioned to a class mate who worked in Coronary Care that her daughter had this disease. The colleague then asked her if Melissa was going to have a transplant. Jane was stunned at this suggestion and after some discussion the CCU nurse suggested she could ask Ian Crozier the cardiologist if he would see Melissa, to which they thankfully agreed. Jane went on to study HCM as part of her cardiology papers and even though she had been a nurse “for decades”, it was a huge learning curve, as she knew nothing of HCM, she says.
Jane’s nursing training was both a good thing and a bad thing as she quickly realised how serious the situation was, especially when the cardiologist told them at an early consultation that Melissa had quite severe heart failure and would need a transplant in 5 to 10 to 15 years. “He wasn’t sure, as he said Melissa was the sickest patient he had seen at her age with this disease. Melissa, bless her, took the next day off work to look after me as I was so upset!”
“Knowing that one day Melissa would have to go to Auckland for a heart transplant sent Trevor and I into a spin, deciding we would have to have enough money to fund this (little did we know that when the time came it was all free). So with fierce determination we planned and budgeted for this unknown, frightening thing that was going to happen to our daughter and our family.”
The cardiologist visits and treatments continued on a fairly regular basis over the years with Melissa’s heart failure and symptoms increasing. “As a Mum it was awful watching her become more tired and more cyanosed. We worried if we could not contact her that something had happened to her, as she lived alone. It was very difficult and frightening.”
“Our cardiologist was amazing, always reassuring us that we had to get the timing perfect for transplant – not do it too soon – and not leave it too late – a very fine line. We had open access to him at any time – he was so caring.”
In 2015, Melissa was referred to Greenlane Hospital in Auckland for her initial assessment which involved numerous medical investigations and appointments with a psychiatrist, psychologist and social worker. This involved several trips to Auckland and Jane always went with her as firstly Melissa had to have a support person and secondly “I just had to be there for me.”
“After the assessments were completed, we had the very anxious waiting time to see if Melissa was suitable for transplant and consequently accepted. After some time to our relief she got the answer we had hoped for and was placed on the heart transplant ‘inactive’ list meaning she was accepted but not quite there yet. She remained “inactive” until March 2017 when she was put on the “active list” as her condition had deteriorated further and so the requirement then was that Melissa had to be available by phone 24 hours a day, and for us there was no question, that we too, would be here for her, available 24 hours a day so we could go with her when she got the call.”
“You can’t plan for a heart transplant; you just have to be prepared to drop everything when one becomes available. It meant planning ahead for home and work commitments so I could be away for up to three months at any time”
Jane vividly recalls the phone call: It was a Tuesday night, and they had just a few hours to be in Auckland. Thankfully, a valuable piece of advice given to them from the social worker was to have a list of what was needed to take so that they could be prepared. “After the initial panic, I grabbed the list and packed”. Jane, Trevor and Melissa drove to Christchurch Airport and as no commercial flights were available, a Life Flight medical transfer service to Auckland was arranged leaving at 11 pm. On arriving at Auckland airport in the early hours of the morning a taxi was waiting to drive them to Auckland City Hospital. After Melissa was admitted and was made ready for her transplant which was scheduled for at 6.30am they had about four hours to wait. “It was a very special, odd, surreal time and a happy time.”
“Melissa spent just a week in hospital. Trevor and our other children were there with us and fortunately, Melissa did really well after her surgery.” After being discharged, Jane and Melissa stayed in Auckland’s heart and lung transplant centre, Hearty Towers. Other family members also came and went, as often as they could “Hearty Towers is an amazing place. All the pre-transplant patients, recipients and their families stay there, and you build real friendships with other families going through the same thing,” Jane says.
The difference in Melissa’s health was profound and almost immediate. The first thing Jane noticed when she was first back in ICU was that Melissa’s hands were warm. “I’ll never forget that”. Melissa will have to stay on anti-rejection medication for the rest of her life, try and avoid people who are sick particularly with viruses, and avoid certain foods due to her weakened immune system, but the outcome has been a life changing success. Six months after the transplant she returned to work part time, and a month later, full time. “It’s wonderful to see her looking so well, and not having that cloud of worry hanging over us. It still seems surreal that it has happened”.
Early in the journey, the Hurley family learned that HCM in their case was familial; an inherited condition which means that having only one changed (mutated) copy of the responsible gene in each cell is enough to cause features of the condition. They then discovered that Jane’s father would have had HCM but it went undiagnosed and untreated in the 1980s so they didn’t realise until that time that his illness was a precursor of more to come for their family. “It came as a bit of a shock.”
Both Melissa’s siblings have tested positive for the gene, although inactive. Jane also tested positive and is now receiving treatment. “This whole journey has made us realise what really is important in life,” she says. “I’m told my heart should be good to get me to 80, but that doesn’t feel far away right now!”
“We’re grateful every day for Melissa’s new heart. There are no words you could ever say to a donor’s family to say thank you.”