Money can be a painful distraction when illness hits a family hard, writes Sylvia Pennington.
When Ellie Smith’s partner, Adam Parker, fell ill last year he ended up enduring nine months of gruelling dialysis sessions in preparation for a kidney transplant.*
Together since 2007, the couple moved from New Zealand to Victoria’s Mornington Peninsula region in 2010, following a work transfer, and bought their first home together in early 2015.
While Parker was sick at birth, medical staff couldn’t figure out what was wrong with him. It wasn’t until he was two years old that a specialist diagnosed him with the incurable respiratory disease, cystic fibrosis. He underwent a lung transplant in 2006, at the age of 24, but appeared hale and hearty when they met, according to Smith.
"He did a lot, he went snowboarding all the time and lived life quite full compared with a lot of people," she says.
"I guess he tried to make the most of it. To me, there didn’t really appear to be any health issues. I knew he had cystic fibrosis but he didn’t seem like a sick person. I didn’t know how bad it was, really."
The downward slope
Taking high doses of steroids following his lung transplant resulted in Parker developing diabetes; a complication which appeared to be controlled successfully with insulin, until his condition took a sharp turn for the worse in late 2015.
"One day after work I noticed that his legs were really swollen – if you pressed on them the flesh would just sink in and not come back out," Smith says.
"He wasn’t feeling like doing anything, just really sick in general, so we started going to the doctor for tests and they told us he was suffering from oedema, which is when fluid builds up in parts of your body.
"It was our first Christmas in the new house and Adam’s mum came over from New Zealand. On Christmas Day he didn’t do anything. He sat on the couch, miserable, and with his body so swollen he couldn’t even fit into his own shoes and clothes."
After an emergency trip to the hospital on Boxing Day, Parker was diagnosed with kidney failure and given emergency dialysis treatment.
He was subsequently placed on the transplant waiting list and advised he could face a five-year wait for a deceased organ donation, unless a compatible family member willing to donate could be found.
Undergoing 10 hours of dialysis every evening while he waited for his health to improve to the point where a transplant could be performed safely made it impossible for Parker to continue working.
Reducing the financial stress
Aside from health, the secondary fear for many couples in this situation is the financial stress resulting from an out-of-work partner’s loss of income.
For Smith there was security. Income protection insurance meant Parker’s ill health and the couple’s anxiety about his prognosis was not compounded by this stress.
"When we came to Australia, Adam’s work set up a policy for him,” Smith says.
"We were so fortunate he was eligible, despite his medical history. After he stopped working he had to wait three months and then he was able to receive 75 per cent of his salary.
"We felt so surprised and lucky. We don’t have children but we had our mortgage and all the normal liabilities and expenses people have. I managed to keep working for most of the year but it would have been a nightmare for us financially if Adam hadn’t had that cover."
In October 2016, Parker’s mother travelled to Australia to donate a kidney for her son; the twin operations an all-day affair at The Alfred hospital in Melbourne.
"Adam and his mum both went in at 10.30am and I didn’t hear anything until 10pm that night," Smith says. "The whole day I was so anxious – panicking. I hadn’t heard anything from the doctors and you just don’t know if no news is good news or bad news."
Getting back on his feet
In Parker’s case it was the former. By March 2017 he had eased back into part-time work and commenced studying towards a diploma in architectural drafting.
"He’s definitely very tired but he will keep pushing through,” Smith says. “He has a lot of motivation – he’s like, 'I’m not going to give up'."
The pair plan to marry in late 2017.
"We actually got engaged two days before Christmas when Adam ended up in hospital," Smith says.
"He had planned to propose on New Year’s Eve but he knew he was too unwell and decided to ask me early. It’s been hard because I wanted to go ahead with everything as soon as possible and he wanted to wait until he was well.
"Life is too short to take anything for granted, especially the ones you love … we’re looking forward to our future together and to finally planning our wedding."
*Based on a personal story told by an ANZ staff member. Names have been changed to protect identity.