The long journey resulting in a double transplant
Unlike many children who are diagnosed prenatally or at birth, Mele was first diagnosed with a heart condition when she was 14 years old. She had always wondered why she was so tired and could never keep up with her friends at school. It all became clear one day when she collapsed while walking to school. Mele was taken to Hospital where doctors discovered she was suffering from pneumonia. However, as time went on, they diagnosed something a lot more sinister.
Mele was diagnosed with Eisenmenger's syndrome which is a complication of a heart defect that you're born with. A heart defect that causes a hole (shunt) to develop between two chambers of your heart is the most common cause of Eisenmenger syndrome. This hole causes blood to circulate abnormally in your heart and lungs and as a result increased blood flow returns to your lungs instead of going to the rest of your body. The blood vessels in your lung arteries become stiff and narrow, increasing the pressure in your lungs' arteries. This then permanently damages the blood vessels in your lungs.
Her syndrome developed as time went by and she was originally told that there was nothing that could be done for her.
As you can imagine it has been a roller coaster journey with many highs and lows. Whilst the condition is effectively untreatable Mele has spent the last 15 years in and out of hospital and has had to give up work and over this time as her health has deteriorated.
Mele came across Heart Kids when in hospital having her Gall Bladder removed and Diane one of the Heart Kids hospital family support team visited her. As Mele’s heart deteriorated she would spend part of most months in hospital. Diane would visit three times a week during this time offering companionship, conversation both light-hearted chats and intense addressing of difficult subjects, She also taught her to knit to pass away some of the long boring hours.
A pivotal turning point came when one day when Mele was telling Diane she felt hopeless and had nothing to look forward to. So, they sat together and made a plan. They talked to the nurse specialist, who then spoke with the wider team. They came back with one final option.
Mele was told that her only chance of survival was to receive a double heart and lung transplant, an operation that is so complex that it is not performed in New Zealand and she would have to fly to Australia to receive the operation in Sydney. Whilst this seemed like a miracle Mele and her family had to go through a grueling process first. Tests, conversations, ethics committee approval, funding approval from New Zealand and funding approval from Australia. It took 11 months for this to happen and she flew over in October for 1 week assessment to be considered on the transplant list.
In early December 2019 Mele was accepted onto the waiting list and she moved over to Australia, so that when a compatible heart and double lung donor was found she was there ready to go. So that she wasn’t on her own her sister left her job and husband behind to support Mele and moved to Australia with her. Then the long wait started for a compatible donor.
They waited and waited….. then in July the call came, the heart and lungs she had been waiting so desperately for had become available. Things had to move fast and within 10 hours Mele was being operated on! The surgery was long and complicated but in principle, successful. There were post op complications and she had further surgery 2 days later.
Since then she has been stable. Her recovery will be long and very much a day by day process, however she is making great progress. By the end of August she has been able to walk around the ward every day, she has walked her first flight of stairs and for the first time ever she has pink nails and pink lips (they were usually tinged blue). She thinks that in the next 2 months they will start planning for her to return to NZ. She is incredibly excited when you talk to her.
At every step of the way Heart Kids has been a huge support for Mele. Diane has spent hours talking, laughing and listening with Mele. This might have been by her hospital bedside in Auckland or on Zoom whilst she has been in Australia. We have also been able to provide financial and practical support to both Mele and her wider family. Mele says:
The support I have been able to access from heart kids has been a lifeline. Its great knowing someone is going to come and visit you each time your in hospital and the events for those aged 18 plus both social and educational have helped me stay connected when I have been unable to leave the house. Diane was there when I didn’t know where to turn and gave me the kick up the bum that I needed. Heartkids has really been a lifeline to me.
Mele hasn’t let her condition define her. She has remained positive, taught herself new skills and has been writing / blogging about her journey and has started her own youtube channel.
Whilst it’s easy for us to focus and consider the children and babies that heart kids support, Mele’s story is a reminder to us all the children with heart conditions grow up to be adults. Their condition doesn’t go away, their needs might change, but they still have needs. Thanks to our generous supporters we are able to provide that lifeline to adults like Mele who still have a long way to go on their heart journey.