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 29th – May 31th 2019
Natalie Cahill: A Wife’s Story
For Natalie Cahill the topic of CF came up on her first date with Michael. “It was the first time we had gone out – we were eating and Michael took his creon. I asked him what they were for and he said, ‘I have Cystic Fibrosis’. I googled it when I got home and it came up with the worst information. As our relationship developed I learnt more about CF from Michael.”
CF affects people in different ways, and Natalie initially thought a relationship with a person with CF would be harder. “Apart from when he is hospitalised, the rest is simply the way things are in our house. Very few times has it stopped us doing anything a non-CF house does.”
The decision to start a family, however, was one of those times. Although men with CF can father biological children, for most men with CF, fertility assistance is required. “We had to conceive through IVF. Our miracle daughter Zoe was conceived on our 11th cycle.”
Natalie is very pragmatic about the challenges of life with CF. “When Michael is hospitalised, I have to balance seeing him and getting Zoe to school for her after school activities to keep her life ‘normal’. We do have family that can help out where possible. Nothing in life is guaranteed, so I go with it and what life throws at us as a family. We are lucky Michael is pretty ‘healthy’. Which has allowed us to travel a little.”
“Michael is an incredible person – he isn’t CF, but it is a part of him. He has a strength that amazes me every day. Along with the ability to get on with life no matter what CF throws at him. Michael always looks after Zoe and I while balancing work and going to the gym to keep healthy and fit.”
31 Days of Cystic Fibrosis. May 30
Tanya Farnell Brown: Dual Perspective, From Sister to Mother
CF has always been a part of Tanya Farnell Brown’s life. Her two younger sisters, Lee-Anne and Narelle, were diagnosed with CF shortly after they were born. “Growing up, it seemed like we were always at the hospital. Chest infections and coughing was the norm in our house. I was often sick, but I noticed both the girls doing things I didn’t. They had this smelly powdery stuff called Vicase that they’d mix with Apple sauce at mealtimes, and physio and nebs too. Lappa or Judy would come to the house to help mum with their physio. They’d take turns. Do physio then nebs. No one ever wanted to be first.”
When Tanya was 13, she started to notice the difference in Lee-Anne’s health. “Narelle was always the healthier of the two and never had any hospital stays, whereas Lee-Anne’s health was up and down; she was in and out of hospital. Hospital stays started to became more frequent.”
“We lost Lee-Anne at the age of 18. She had a low lung function for a long time, along with other issues. This time her kidneys started to fail. Treatment wasn’t successful, and there was talk of her going over east for transplant, as it couldn’t be done here in WA at that time. Sadly it was too late, and she became too ill to be able to travel there for it.”
“Narelle is 43 now and Mum to a 13 year-old son. She is one of the strongest and bravest women I know. She had the opportunity to be a part of the Orkambi trials, and it is now part of her treatment plan. I’m happy to know it seems to be working for her. She is stable at the moment and hasn’t had to have IV treatments for over a year!”
“We were devastated to lose my sister Lee-Anne. And I definitely don’t want to lose another sister.”
In 1998 Tanya gave birth to her son, Sam. “Sam was a happy, healthy baby showing no health concerns. For some reason, CF was in the back of my mind. I looked out for signs. Over the summer months, I noticed a saltiness to his skin. Not just his forehead but his feet. I thought maybe I was overthinking it. Was I making something out of nothing? It could be nothing, but it still stayed in my head. Sam was a good eater gobbled up everything. But I felt I wanted to go to the hospital and have him checked, for my piece of mind.”
The diagnosis was soon confirmed. Like Tanya’s younger sisters, Sam too had CF. “I was given info packs to read and told ‘Now go home and enjoy him for as long as you have him. Someone will be in touch for further testing.’ This, of course, was emotionally overwhelming. I’d lost my sister, Lee-Anne, just 6 years before from CF.”
The daily routine of medications, nebs and physio started again, but this time, it was Tanya’s responsibility. “My main aim was prevention – to prevent his exposure to illness. I became super vigilant. I was always listening to his breathing and looking for signs that might show he was coming down with something. I started screening visitors. I’d ask them all if they were sick before they came over. Or before we went to theirs. I quickly learnt that other people’s perceptions of sick are definitely different from mine. They don’t realise how the risk of a simple cold to them could end up being life threatening to another.”
“I was strict with a physio routine. As a baby laying on our laps, it was nice when Sam stayed still. We had Judy as a physio aid for us from CFWA. Judy had also done Lee-Anne and Narelle’s physio when they were younger. To me, it was like an old family member coming home.”
For Sam, hospital admissions were stressful, and doing IV treatments at home became the preferred treatment option. “Sam is now 20 and he’s not needed IV treatment for 12 years. We’ve been lucky to be able to keep his cough dry, and he’s only chesty when he has an infection.”
“I’ve learnt to take each day as it comes. Be thankful for every day that we are, in our own way, healthy and happy. Each day try to look on the good side of things and be hopeful all goes well. All the changes I’ve seen in treatments for CF and the knowledge gained through research over the years is really quite amazing. Like Orkambi. What a gift that is. It reinforces our hopes for the future.”
31 Days of Cystic Fibrosis. May 31
Harry Sippel: A Son’s Story
The implications of what CF meant for Harry Sippel’s mother became apparent at a very young age as he would accompany her to her various doctor and hospital clinic appointments. “My Mum is a very honest person and would tell me everything that went on with her health. That’s how you must be with such an erratic disease. Even though I was very young, I understood what my Mum had to do in day to day life.”
Rather than struggling with this information, Harry found his Mum’s honesty empowering. “If something bad happened I wouldn’t know what to do or what was going on. If I didn’t know what was going on, why she did certain things, then I’d be angry.”
“I played heaps of sport throughout my life, and thanks to my loving parents they always got me there. Sometimes I was a couple of minutes late for the game because I had to wait for my mum to finish her drugs. Most days, Mum would be there for me; however, if she couldn’t come, Dad would take me. That’s okay because I understood.”
Having watched the ups and downs of CF, Harry’s experienced many emotions. “Over the years, I have been very scared and worried. However, my Mum is the toughest person I know. She taught me how to be positive when times are tough, which is easier for me to deal with it.”
That positivity saw Kerry recently celebrate her 50th birthday.
Harry said, dealing with his mother’s CF’s is the reason he is tough and honest himself. “Everything in life is valuable, and every memory counts. Without my Mum, god knows where I would be today. She taught me how to deal with my type 1 diabetes. Life may throw many hurdles at you, but it’s how you jump those hurdles that really counts.”
This year through May I wanted to show that CF is a disease that affects not only the person with CF, but their entire support network. I wouldn’t have been able to do this without the help of the following people:
Harry Sippel & Kerry Sippel
Tanya Farnell Brown & Narelle Louise Brown
Claire Stubber & Ian Stubber
Aidan Fraser & Jackie Fraser
Karen De Lore
Merle Crawford & Caz Boyd
Daniel McKeon & Melinda McKeon
Chris Rowe & Lozza Rozza
John Rootsey & Rootsey Kate
To each of you, I extend a huge thank you, for your time and willingness to share your story.
Thank you also to everyone that has taken the time to read, comment and share the stories, each of you has contributed to raising awareness of CF and the impact it has on families across the world.
Missed the start?
31 Days of Cystic Fibrosis Part 1 2019 starts here
Part 1 2018 starts here