May is Cystic Fibrosis awareness month, and once again I’ve done 31 Days of Cystic Fibrosis on Facebook and Instagram.
In 2019 I concentrated on a hidden side of CF and profiled people who are impacted by CF.
May 10th – May 13th 2019
Daniel McKeon: A Husband’s Story
Daniel McKeon thought he had an understanding of the practicalities of living with someone with CF from his friendship with both Melinda and her sister Julie. However, Daniel realises now that everything he thought he’d known about CF was nothing compared to the reality. Daniel said, “I went in blind. But you get through it.”
At first, the focus was more on the daily regimen of physio, nebs and tablets, as Melinda was only admitted to hospital on average twice a year. Daniel describes this time as manageable without a huge impact on their lives. “It was minimal compared to now.”
Daniel is frank about their decision to start a family; he didn’t want to. To Daniel, the benefits outweighed the risk, but only marginally. “I said no. I knew how much of an impact it could have on Melinda. But I got outvoted because Melinda’s vote counted more than mine. We went through a lot to have Luca. It was a big risk, but Melinda is a stubborn woman.”
“When Luca was four it was obvious that Melinda was headed on a path that lead directly to transplant,” Daniel said. Melinda spent the majority of the year before her first transplant in hospital, but as Luca had grown up visiting her Mum in hospital, this time faded into the background for her. “When I told Luca her Mum had new lungs, her first question was to ask if new lungs meant she could have a sleepover with Aunt Jaki.”
Melinda spent the year following her transplant in and out of hospital with numerous hiccups along the way. As Luca got older the impact started to get bigger. “Luca was too young to comprehend what was going on then, but with the second transplant, nearly two years ago, she was older. Luca knew what was happening, what the consequences would be if the second transplant didn’t happen.”
“We never kept anything from Luca, always answered any questions. She knew what was normal and what wasn’t. We’ve always said, if Luca’s got questions, we’re going to answer them.”
Daniel and Melinda McKeon
For the eight months leading up to Melinda’s second transplant, the McKeon’s couldn’t do much as a family. Melinda was dependant on oxygen and spent a great deal of that time in hospital. Although the mother-daughter bond remained strong, Daniel and Luca increasingly spent more time together, “We’d go on little adventures.”
During this period in their lives, Daniel saw a different side to the work charities perform. Now, he volunteers his time to help others, as a way to give back, like as his family has been helped. “People have always been willing to help out. You see a different side of people when you’re going through hell. You get to know who the good people in your life are.” Daniel said.
Financially, life post-transplant is harder, due to the volume of medications that Melinda requires. Dealing with Centrelink is frustrating, time-consuming and mostly pointless. “It’s not about the money,” he said, “We need a Health Care Card.”
Daniel wants automatic access to a Health Care Card without having to justify the need to Centrelink on an on-going basis. Here, Daniel is not alone, despite calls from Cystic Fibrosis Australia for all people with CF to automatically qualify for a Health Care Card, there have been no changes in legislation by the government.
Daniel’s advice to someone contemplating a relationship with someone with CF us “Don’t fear the commitment to someone with CF – because yes it will impact your life, but you’ll get more positive than negative out of it. But get ready because it’s quite a journey.”
McKeon Family
31 Days of Cystic Fibrosis. May 12
Jamie Wood – Senior Physiotherapist, Cystic Fibrosis
While doing his junior rotations as a Physiotherapist, Jamie felt drawn to the respiratory rotation, and in particular, he found himself interested in working with people with CF.
The ability to treat people who all have the same condition appealed to Jamie. From a physiotherapy perspective, the age group and fitness of people with CF differ from other respiratory patients. For example, in the general population, lung disease often manifests later in life and can have a quick impact on mobility and the ability to function at home.
In contrast, in people with CF, the role focuses on integrating the physiotherapy they need – whether it is airway clearance or exercise into their lifestyle. CF doesn’t only impact the lungs, it affects most body systems, and this is a challenging aspect to Jamie’s role as a physiotherapist – even after 10 years, Jamie says he’s still learning about CF.
Another challenge when treating people with CF is that they understand their disease very well, which can at times be a double-edged sword. Outdated and incorrect information in abundance is freely available on the internet. It’s therefore critical to include people with CF in any decision making about their treatment. If you don’t manage to do that well, quite often the treatment plan won’t benefit them as much as you would hope
Occasionally, Jamie sees people with CF that “Try really hard, try their guts out, and still inevitably they get unwell.” And there are always those who manage to pull something out of their pocket. Jamie says, “I was giving someone a hard time about doing more airway clearance, and he got a new best FEV1, jumped up and shouted ‘suck it!!’”
The trade to these challenges are the rewards of working with people with CF. From a macro perspective, providing education about the need for airway clearance and exercise is a critical factor that can make a positive impact on the lives of people with CF.
On a micro level, Jamie can provide someone with day to day tips to keep progressing their airway clearance and exercise along the way. The long-term relationship allows him to layer these tips and strategies more comprehensively than a single session would allow.
However, the ultimate reward of Jamie’s role is seeing people with CF go on to achieve their goals. “To be told you have made a positive impact on someone’s life is pretty special.”
Bonus Fact: If you ever have a spare half an hour, Jamie will happily spend it explaining why exercise is so important for people with CF.
Jamie Wood
31 Days of Cystic Fibrosis. May 13
The Last Walk
Some of the profiles posted this year have highlighted the incredible medical staff that I have been fortunate to meet. Staff who over the many years have turned a blind eye to shenanigans or actively participated. Staff who have brought home-cooked meals, or sat with me in the middle of the night simply because they can.
The Last Walk is not only an #ourvoices story but a thank you to some of the glorious staff that have made hospital admissions easier.
The character of Saanvi is a nod to everyone involved in the care of CF patients from the days of B12 right through to G54.
Saanvi is Sue and her passion for ensuring that Ward B12 always ran like clockwork, that her CF patients lives are made a little easier by cutting through red tape, and who has an uncanny intuitive ability to provide me with what I needed before I knew I needed it.
Saanvi is Pushpa with her eternal night shifts, Tiger Balm, midnight toast and hot chocolate.
Saanvi is Yvonne with her water fights and jokes.
Saanvi is Michelle & Alison and their long chats, which provided distractions at precisely the right moment.
Saanvi is Jamie who carried oxygen bottles with ease, and pushed me to do my best and always managed con me to walk another lap of the ward.
Saanvi is John and his gentle hands as he changed first my PICC, then my infusport dressings.
Saanvi is ’Uncle’ Gerry with his empathy and humour.
Saanvi is a nod to acknowledge those people who are more than medical staff as they became an important part of the lives of people with CF.
And as with every fictional story based on fact, the truth is way more fascinating than fiction, and I had to leave out far more than I included – I’m not sure anyone who didn’t live through the experience would have believed it!
You can read The Last Walk on CF Creative Space
Sandi Parsons, reader, writer and storyteller. 