31 Days of Cystic Fibrosis 2019: Part 1 May 1st – 5th

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 1st – May 5th 2019

31 Days of Cystic Fibrosis. May 1
Helen Price: A Mother’s Story

A diagnosis of Cystic Fibrosis in the early ’70s was devastating for many parents, but the initial reaction for Helen Price was a relief. Finally, Helen had a diagnosis for her daughter, Sandi, along with a script for enzymes and more importantly a treatment plan.

However, the diagnosis of Cystic Fibrosis was delivered without explanation, and Helen knew she required more information. At the library, a one-line answer revealed that CF was a childhood disease. At the next clinic visit, she asked carefully considered questions. However, the answers continued to be spoon-fed with the information imparted over several months.

Eventually. after months of questions, she was told the grim news – her daughter only had a 50% chance or reaching 13. With all the pieces of information in place, Helen now knew that the initial prognosis was bleak. 

The entire family was involved in the daily regimen to keep Sandi as healthy as possible. Endless enzymes to digest food, nebulisers and physiotherapy sessions. There was no alternative other than to adapt to this new way of life. This daily regimen came hand in hand with learning to be patient, tolerant and brought with it a greater depth of understanding and sympathy to people who were ill. 

Everything was day-to-day – the future was never under consideration. Because according to the information, the statistics, there wasn’t supposed to be a future for a child born with CF in the early ’70s. The improvements in life expectancy, the advances in treatment – everything that has happened around the treatment of Cystic Fibrosis since Sandi was diagnosed has been ground-breaking.

Helen and Sandi 1973
31 Days of Cystic Fibrosis. May 2
Kathryn Pekin – Services Manager at Cystic Fibrosis Western Australia 
As Services Manager, part of Kathryn’s role is the provision of counselling support to both people with CF and anyone with a connection to CF. Cystic Fibrosis Western Australia have adopted a family-centric approach, as the importance of supporting a person’s entire network is backed up by extensive research. Therefore, Kathryn provides support to a complete network including family members, teachers and work colleagues – as CF impacts more than the individual.

Supporting people with CF and their network is a partnership which allows Kathryn and the wonderful team she works with at CFWA to work creatively to find the best solutions.
The toughest issue faced by CFWA, and by extension, the CF community is that of cross-infection. As an organisation, CFWA has to be sensitive to the needs of the people with CF, while still maintaining best practice with hospital guidelines. It’s a fine line. 

During Kathryn’s 13 years with CFWA cross-infection has increasingly become a tougher issue to navigate. For families that are newly diagnosed, cross-infection can cause a lot of angst. In response, Kathryn and CFWA are looking more and more towards digital technologies, and in particular, videos featuring people with CF sharing their lived experiences to help overcome this hurdle.
While digital technology is part of the solution, Kathryn knows that it’s not the complete answer to solving the isolation people with CF can feel. Providing support services focused on mental health will go a long way towards combatting the challenge of isolation. Kathryn is excited to be involved as CFWA instigates more services in this area. 

Despite her wonderful working team, the job does have its downfalls – even with all the measures and services that CFWA has in place there are still many gaps, and this knowledge can, at times, be overwhelming. 

Editing Note: I told Kathryn I hoped putting up with my son at the CFWA siblings and offspring camps was NOT the worst part of her job and this notion was met with way too much laughter. 
Kathryn Pekin – Services Manager at Cystic Fibrosis Western Australia
31 Days of Cystic Fibrosis. May 3
Katya Price: A Mother’s Story

Before Jordan’s diagnosis via the Guthrie test, the only exposure Katya Price had to CF was knowledge of a friend’s child who died young. Her first thoughts focused on the fear that her child was going to die.

Jordan’s diagnosis impacted the entire family with emotions from denial to devastation. Katya herself found the process overwhelming, and later on when she had had enough time to process everything properly she found herself depressed. Eternal sadness – the wording borrowed, but Katya feels it is so reflective of how she felt. 

As a coping mechanism, Katya immersed herself in the CF community to learn everything she could to help Jordan; she surrounded herself with people who could teach her, look after her and tell her what to do, including working at Cystic Fibrosis Western Australia. But with time, it became so consuming that Katya realised she no longer had a life outside the world of CF and it was time to step back.
Reflecting, Katya wishes she’d known the realities of life with a child with CF – that It was more than living with an expiry date. Knowing the various stages of CF would have empowered her, given her the knowledge that CF was manageable and Jordan’s life would be like any other kids – however there would be extra stuff he needed to do to stay healthy. 

CF made Katya stop and think. In the time before Jordan’s diagnosis, she had lived for tomorrow, working hard for a future without a mortgage. Now Katya strives to live everyday more meaningfully; she spends more time with her family and has a better quality of day-to-day life. Katya changed her life to give Jordan the best possible life she could, and if she could change one thing about CF, she’d remove the psychological impact of living with a cloud over your head. 

Katya has the following advice for parents of newly diagnosed children, ‘Don’t compare your child to other children with CF. Endless comparisons can see you end up with either a false sense of security or insecurity – neither of which help in the long term.’ 

Katya and Jordan
31 Days of Cystic Fibrosis. May 4
Jarryn Bowie: A Son’s Story
Having a mum with Cystic Fibrosis was Jarryn’s normal.
Over time he came to realise that other parents didn’t take handfuls of tablets every time they ate.
Other parents didn’t do physio.
Other parents didn’t go to the hospital to see specialist doctors regularly.
Other parents didn’t have friends in hospital that they would visit every other week.

Gradually the realisation dawned on him that having CF meant his mum was different from the other mums. However, that realisation had little impact until his mum’s health started to decline.
At first, the only change was that his mum started to cough more. Jarryn knew a major CF coughing fit would always pass, but when out in public he’d find that people would blatantly stare with a morbid curiosity. Never once did anyone ask or think to check if his mum was alright.When his mum came home from hospital on oxygen, Jarryn started to worry. Oxygen therapy was different from the regular maintenance regimen that he was familiar with. Of more concern, was that along with the oxygen came talk of a lung transplant. Previously he could help out, doing little things to help his mum. The transplant wait list was a different ball game – there was nothing he could do except wait and hope that a lung transplant would happen in time.
Post-transplant Jarryn says his mum has changed. She has more energy and is more like the mum he remembers from when he was younger.
As a carrier of the CF gene, Jarryn is aware of the possibility that his child might have CF. However, he doesn’t see it as a big deal. He’s aware of the advancements in treating CF, in particular in the last five years, and while these advancements haven’t provided a cure for CF, they have taken a huge leap in that direction. More importantly, he knows that if he does have a child with CF, there is hope and a future.

Editing Note: Jarryn mentioned that one of his favourite CF related memories was visiting me in hospital because the nurses would give him choc milk and lollies, then he’d hijack my jelly. I couldn’t help but burst his bubble. There was no hijacking – I always saved the jelly for him.

Sandi and Jarryn on Jarryn’s 21st Birthday
31 Days of Cystic Fibrosis. May 5
Sue Morey: Nurse Practitioner, Respiratory Medicine

Sue Morey is in a position to make a difference, and she takes advantage of her position to short-circuit the system and achieve the best possible outcomes for CF patients.

Working with CF patients differs from other respiratory patients due to the demanding nature of the disease and the requirement of a life-long continuous commitment. Additionally, CF patients are usually younger, occasionally stubborn**,and need more guidance to be compliant with treatment.

Sue says she was ‘lucky enough’ to be able to work with Dr Gerald Ryan to develop a model of care for CF patients, that not only works well but is in the best interests of the patients. An open-door policy allows patients to call Sue whenever they have a problem. Problems can range from the simple – a new medication script – to urgent access to a hospital bed.

For Sue, the best part of her job comes via the positive reinforcement from her CF patients. Her input is appreciated, as is the ease with which she can navigate the hospital system making dealing with CF a little easier. (My freddo bribery system pales in comparison to the way Sue operates.)

The flip side to the job is the reality that after years of building relationships and working with people with CF, many do deteriorate and die.

Bonus Fact: I’ve seen Sue on more than one occasion short-circuiting the system, and she is a force to be reckoned with. After nineteen years of refusing to be admitted to hospital unless it was necessary, I woke one morning knowing I needed to be admitted immediately. As Grant drove me, I rang Sue and asked her to arrange a hospital bed. Without question, she agreed. Ten minutes later as we pulled into the carpark, Sue was waiting for me with a wheelchair and oxygen. As she bustled about arranging a bed, I overheard one of the staff say, “You don’t ever want to get between Sue and one of her CF Patients.”

**NO! Sue was not referring solely to me. I know because I checked!!

Sue Morey


Missed last years 31 Days of Cystic Fibrosis? Part 1 2018 starts here

31 Days of Cystic Fibrosis 2018: Part 6 May 26th – 31st

May is Cystic Fibrosis awareness month, and this year I’m doing 31 Days of on Facebook and Instagram. Please feel free to follow me.

May 26th – May 31st

31 Days of Cystic Fibrosis. May 26
Survival is a team effort
My decision to stay at home did not mean I was the sole person responsible for my health. I was surrounded by a team of people that were working together to keep me alive.

On a practical level, Mum was chauffeuring me to multiple appointments each week. Grant was preparing food, in charge of the hygiene requirements to keep my various medical equipment sterile, and in the last few weeks he took on the task of sorting out my IV medications and pre-preparing them for me. (All the while, both of them still had to attend their day jobs.)
Dale, my homecare worker from Cystic Fibrosis WA, came twice a week to take care of light housework and assist with physio treatments. John, my homecare nurse from CFWA, came once a week to change the dressing on my port.Physio staff from both hospitals compiled exercise and muscle strengthening programs for me – which I refer to as “pilates in bed”. In addition, Jamie did my lung function at clinic until it dropped that low that measurement pointless. (My last official measurement indicated that only 10% of my lungs were working.) Also at clinic, Paul the dietician kept an eye on my calorie intake and weight loss while Dr Joey kept an eye on my blood sugar levels.

Sue, or Aunty Sue as she is affectionately known, our Clinical Nurse Specialist, looked after my various scripts (including getting them filled) along with arranging my weekly tub of supplies full of syringes, saline, alcohol wipes etc and had them ready so that each Monday Mum could exchange an empty tub for a fresh one. Sue would also take blood from my port, and collect sputum samples to save me the walk to Path West. (Sue is an incredible woman and has an uncanny ability to read her patients. The less attention she pays to you the better, when she starts doing all of your fetching and carrying you know things are getting serious!)Uncle Gerry saw me in clinic once a week and would then liaise with Dr Mike to keep Royal Perth updated with my status (important for your ranking on the transplant list.)Behind the scenes were people I never saw. The pharmacist checking my various medications to make sure there were no contradictions, pathology staff checking all my various samples and various researchers over the world who developed new medications and technologies that had gotten me to this point (the new improved enzymes, ciprofloxacin, azithromycin and Pulmozyme).

Bonus Fact: During this time, I had one job. All I had to do was keep breathing. It may seem easy, but the effort required to lounge around in bed all day and continue to breathe was causing me to lose ½ kg a week despite my calorie intake being three times the daily recommendation. I was clinging to life by my fingernails.

31 Days of Cystic Fibrosis. May 27
Friday, May 27th 2011 – Transplant
Grant had gone to work, and I was reading in bed, Monkey tucked in my armpit. Our house phone rang. It rarely rings, most people knew to call my mobile. Normally I wouldn’t have worried, but I had a feeling this phone call was important.

By the time I’d unhooked my Bi-Pap, hooked up my oxygen and made my way to the phone it stopped ringing. I shuffled back to bed and sat for a moment staring at my mobile. As I weighed up the effort it would take to unhook my Bi-Pap versus waiting a few more moments to see if my phone would ring, it did.
Lungs had been offered. Lungs that had been matched to me.
When Grant and I got to the hospital, there was a sobering truth to face. In ‘normal’ circumstances, I would be prepared for surgery while under general anaesthetic, then ventilated while the surgeon checked the lungs to confirm he was happy for the surgery to proceed. Dr Mike told me my lung function was at the point that if I were to be ventilated, and the donated lungs did not pass the surgeon’s inspection, I would need to live in ICU while I waited for another offer. The compromise was I would go through and have all the various lines installed and primed, and would only be ventilated if the surgery was to proceed.
It is said that your life flashes through your mind as you’re about to die. When you’re primed for surgery and waiting on your lonesome, your life doesn’t just flash, you have time for reflection. I’d had a good life. I knew I was rolling the dice for a chance to have a future, knowing that I might not be strong enough to survive the surgery. I also knew that these lungs were my only hope.

Bonus Fact: On the 27th May 2011, it was 65 Roses Day, and my Aunty Mary had been planning to take me to have lunch with my Gran. I sent her a text declining her invitation due to having a “better offer”.

Extra Bonus Fact: I wanted to have a Facebook status of “Hi Ho, Hi Ho – it’s off for lungs I go..” posted after the phone call to confirm the surgery was going ahead. “He Who Was in Charge of the Communication Device” vetoed it.

Extra Extra Bonus Fact: My expert updo (pictured below) was skillfully arranged by my ICU nurse who used a rubber glove because we had no hair lacky available.

Extra Extra Extra Bonus Fact: Dr Mike had I had a conversation about what to expect in the ICU, and he asked if there was anything in particular I was worried about.
“Yes,” I said, “I’m going to need that ventilator tube out ASAP.”
“Why the tube phobia?” he asked.
“No phobia, but I think it’d be easier to complain without it.”
He didn’t look amused.

31 Days of Cystic Fibrosis. May 28
At home, Monkey was slowly deteriorating. Grant asked my team when I would be allowed to see her, as he was worried she wouldn’t make it to see me come home. The clearance, he was told, would be given when I had all tubes and drains removed to minimise the infection risk. It was a goal to work towards.

8 days after my transplant, I had my final chest drain removed and on the 9th day I was cleared to leave my room. On the 10th day, Grant took me down to the carpark in a wheelchair where Monkey was waiting.
My beautiful girl, who had stuck with me through thick and thin, who over the years had spent many nights in the bathroom sitting next to me when my enzymes hadn’t worked quite how they should, who had stayed up late to sit with me while I injected my last dose of IVs’ for the evening, and who had been my constant companion ‘looking after’ me while I’d been waiting for the call that would change my life, was now too weak to jump out of the car yet at the same time was practically jumping out of her skin with pleasure to see me.
So, I gingerly climbed in the back seat and sat with her. My Monkey, who had never ever liked anybody to breathe near her, sat thumping her tail and sniffing my breath. Because my breath was carrying a message, it told her I was no longer dying, and because of this, she knew that she didn’t have to hang on to look after me any longer.
Bonus Fact: My oxygen cord had a limit of 20 metres. In the beginning, I could walk a little faster than Monkey could, so she’d sit on my oxygen cord to make me wait for her. Towards the end, as she was sleeping more and more, she started sleeping with my oxygen cord wrapped around her paws, so she could wake up if I moved.

31 Days of Cystic Fibrosis. May 29
Life Post Transplant

On the 9th day post-transplant, I had my first shower standing up in seven months. Afterwards, I remember looking at my battered body in the mirror. I was covered in scars, dressings and bruises and all I could think about was how great life was. Because I could breathe.
I was filled with a simplistic pleasure in knowing the enjoyment of something that most people take for granted. I could breathe, walk, and talk, all at the same time again.

These lungs are magnificent. They do what lungs are supposed to do, and they do it naturally and without effort.

That’s not to say that my recovery wasn’t without effort. I put in hours at the gym, followed by hours of walking. On the 3 month anniversary of my transplant, I walked 4kms in the City to Surf. It took me 56 minutes, which may not seem like much, but before my transplant, I couldn’t walk the full 20 metres on my oxygen cord without stopping.

Full recovery including adjusting to life post-transplant and the various side-effects of my new medications took 12 months. But every second of that recovery was worth it because even now there is still so much joy in simply breathing.

Bonus Fact: I have done so much in the last seven years, I’ve travelled, received industry awards for my library work, published two books and seen Jarryn turn 21. All of this possible because a family said yes to organ donation.

31 Days of Cystic Fibrosis. May 30
A Transplant is a Trade Not a Cure

On the surface, it looks like my transplant provided a cure, but that’s not the case. I will always be a person who has chronic health issues; I traded one set of health problems for another, the bonus being I am still breathing, still alive and ready to continue the fight.

My first complication had minor symptoms, my left hip ached, something that is seemingly innocuous. Investigations revealed I had avascular necrosis in my hip. Essentially the medication keeping me alive was also strangulating the small vessel that supplies blood to the head of my femur, causing that bone to start cracking. My team managed to stabilise the problem, but eventually, I will need a hip replacement.

Towards the end of 2013, I was displaying all the symptoms of post-transplant lymphoma – all my lymph nodes on the left side of my body had enlarged. However, it turned out I had a funky fungi instead, one that has a reputation not only for mimicking lymphoma but also for being fatal. It saw me embark on two years of antifungals — a treatment that caused massive damage to my skin and both precancerous and cancerous growths develop on my face, chest, arms and hands.

Bonus Fact: As far as my team are aware, I am the first person in Australia to contract this fungi after a lung transplant. There is no data on surviving this fungi on a long-term basis. Because of this, they don’t know if my funky fungi has been eradicated or if it’s dormant and may resurface again. The guys in the white lab coats were all very excited to have an opportunity to study something they had never seen before and nerded out over the results of my bloodwork, establishing that I contracted the airborne version of the funky fungi, and it then migrated to my blood, and not the other way around.

Extra Bonus Fact: Post-transplant lymphoma is caused by the very medications that keep transplant patients alive. Everything is a trade, always.

31 Days of Cystic Fibrosis. May 31
The Future

I hope that by sharing my story, I’ve raised a little awareness about what it’s like to live with Cystic Fibrosis. Now’s the part where I ask for a little help.

Recently, the first medication to treat the cause of CF was developed. It was unique in that every prior medical advancement had only treated the symptoms of CF. Getting Kalydeco on the PBS was a mammoth effort, but Kalydeco only treated a specific mutation of the CF gene. Orkambi is the latest medication. It treats the most common mutation of CF, identified as Delta-F508. It’s my mutation. I have a double Delta-F508 mutation.

As a person with Cystic Fibrosis who is post-transplant, Orkambi can’t help me – but there ARE people it can help, if only it were listed on the PBS. I can’t imagine how heartbreaking it must be to know that there is a treatment that doesn’t merely improve the quality of life but extends it, and not being able to access it.

To help those who can be helped by Orkambi, please consider adding your name and comments to the Pharmaceutical Benefits Advisory Committee
You’ll find Orkambi listed under LUMACAFTOR


Cystic Fibrosis Western Australia has played an important part in my life. As the end of the financial year looms closer, if you haven’t chosen a charity to donate to, I hope you’ll consider CFWA – they’re doing important work. Their mission is “Lives Unaffected by CF” Without their help, my life would have been significantly harder.


And finally, if you’ve never had a chat about organ donation, talk to your family today. Let them know your wishes. Knowing their loved one’s wishes plays a huge part in families consenting to organ donation. It’s a hard conversation to have, but having that chat can save lives. It saved mine.

Bonus Fact: I have been extremely fortunate to arrive at May 31st 2018, aged 45, with the opportunity for more great years ahead. Many children born with CF are not so fortunate as the average life expectancy remains at 38 years.

Thank you to all the wonderful people who have helped me on my journey and without whom I would not be here to share this story. Thanks also to all of you who have taken the time to read my daily posts and share my trip down memory lane.

Finally, and most importantly, to my donor family, as always my eternal thanks and love for saying yes to organ donation in your time of loss.


Missed the start of this?

Part 1 starts here

31 Days of Cystic Fibrosis: Part 3 May 11th – 15th

May is Cystic Fibrosis awareness month, and this year I’m doing 31 Days of on Facebook and Instagram. Please feel free to follow me.

May 11th – May 15th

31 Days of Cystic Fibrosis. May 11

Sometimes, best friends have no qualifying factor. I can’t tell you why Julie was my best friend. Only that she was.

We grew up going to CF camp together, attending clinic together and in between times we wrote to letters one another. Letters filled with oh-so-important growing up stuff. Even as housemates, we continued to write to one another although we’d graduated to exercise books by this time. Often we’d sit at the same table, pens frantically writing away. I once wrote six pages on how she rejected the bread, and in return, I received four pages complaining about my six pages.

We went on stealth missions together; we danced, we painted our faces like Kiss to pick up pizza, there was the mysterious case of the higha-woofas, urtundidi, the occasional “There’s not something wrong with the hammer” and drawings. And so, so much laughter (which always ended in coughing fits).

Through everything, Julie always called me Bird or Birdie. Biiirrrrdiiiie when she was especially chipper. I wanted her to know that I’d carry the nickname she had given me forever, so I had a ladybird tattooed on my stomach a few weeks before she died.

Julie dealt with everything that CF threw at her with grace and a dignity that was well beyond her years. Of all the friends that CF has taken from me, the loss of Julie cuts the deepest.

Bonus Fact: I once went to bed and left Julie in charge of a party.
Bad, bad, bad move.
When I woke the next day, all our garden furniture was on the roof.

31 Days of Cystic Fibrosis. May 12
Growing Up When Your Mum has CF

Having a baby, I was told, is hard. As time passed it would be inevitable that my mothering instincts would kick in, I would sacrifice my medical needs to care for my child, and my health would decline.

I ensured my health did not decline by continuing to be an avid reader. Would I have been a reader if I did not have CF? Most likely. But perhaps reading would have been something I could have sacrificed as life got busy.

As Jarryn grew, I continued to read. I read a lot. Because reading has always been my way of pacing myself. To slow down, to rest, to be selfish and look after me. When Jarryn was a baby, I’d often drive to my Gran’s house, and let her look after Jarryn while I lay on her bed and read.

As he got older, I read while he played. On the days I didn’t feel I had the energy to keep up with Jarryn and his friends, I’d let them ride their bikes, play on the trampoline or climb the tree while I sat on the curb and read.

I often wondered what Jarryn thought of his childhood, and if he felt he missed out on things because I had CF, so I asked him.

“I was always busy, riding bikes or my Green Machine, jumping on the trampoline, playing with the dogs or games with my friends. Mum was always there. Sometimes she rode the Green Machine or jumped on the trampoline with me, and other times she would read while she watched me play.
Looking back now, I realise that the times she read instead of joining in were the times she was sick and needed to rest more. Back then, however, I had no clue. She was just Mum who liked to read a lot.”

Extract from ‘Growing Up When Your Mum Has CF Part 1’
Read Jarryn’s Full interview 

Bonus fact: A 31-year-old competitively racing Green Machines against eight-year-olds may not be very dignified, but it’s a great way of doing physio.

31 Days of Cystic Fibrosis. May 13
Mum (Mother’s Day)

This post is well out of chronological order, but I thought it best saved for this day. At eight, my mum made me responsible for taking my medications. At nine she handed over responsibility of drawing up my nebs. At twelve I took over my physio. At fourteen, my team at PMH suggested a transition period. The first appointment went smoothly, I went in first, told the team what had happened since I had last seen them, then Mum was called in, and they told her what I had told them. The team envisioned this ‘transition’ would take several years, but they didn’t factor my Mum into the equation.

On my next clinic visit, I caught the bus to Subiaco, then walked to the hospital. I was called when it was my turn, then they asked for Mum. To say they were gobsmacked when I replied I’d caught the bus is an understatement.

So they rang my Mum.

She replied that this was my disease to manage, not hers. And she didn’t attend another clinic appointment for 24 years, and then it was only because I was on oxygen and needed a chauffeur.

Mum’s reasoning was based on her statement to the doctors about CF being my disease to manage. She had witnessed friends children with CF go rapidly downhill when they hit adolescence, mostly due to rebellion and non-compliance. She hoped that by handing me control, I wouldn’t rebel quite so much.

The added bonus was that when I left home at 18, she knew I’d been managing my health for four years, so my health management wasn’t something she needed to worry about.

The result is that I’ve never been shy about advocating for my own health.

It wasn’t until I was a mother myself that I realised how difficult this must have been for her. So thanks, Mum.

Bonus Fact: I’m not going to lie and say I was perfectly compliant all the time. At the time the CF diet was still low fat, and I had a rather large dislike to the powdered milk I was supposed to drink, so I would wait until nobody was home to hop into the full cream milk. Some mornings I would skip my physio and say I hadn’t or just lay on my physio table and read. My first few admissions were a direct result of taking these shortcuts, and the lesson was quickly learnt.


31 Days of Cystic Fibrosis. May 14
Hospital in the Home
Jarryn was three when a sinus infection spread to my lungs and tipped my health upside down. It was an infection that ultimately cost me 10% of my lung function. For the first time in years, everything else failed, and I needed IV antibiotics. Fortunately, by this time, the Hospital in the Home (HITH) program was up and running. It meant that a person with CF could spend the first few days in hospital, and then continue the IV antibiotic course at home. Cystic Fibrosis WA organised nurse and physio visits at home.
I always liked to do things differently, and I had Jarryn to look after, so I always skipped the first three days in hospital, had my PICC line placed as an outpatient and went straight home. A PICC line has advantages over IV cannulas as they last for the entire course of IV’s. The line is inserted into a vein near the elbow and threaded through to end in an artery near your heart.

HITH meant that I was responsible for both drawing up my IV medications and then giving myself the push dose through the PICC line. Dependant on the antibiotics, dose schedules could be twice daily, every eight hours and occasionally every six hours.

This flexibility allowed me to continue to work, look after Jarryn and go to the occasional wedding. (As far as I know this is the only picture I have where my PICC line is still visible. This was normal life for me, so we never saw a reason to capture it on film.)

Bonus Fact: I’d always taught Jarryn that when having a new playmate over, he should show them around the house, so they know where important things like bathrooms are. We had recently moved, and Jarryn had started a new school, and his first friend had arrived. I was pre-preparing my IV medications for the next dose, as Jarryn took his friend through the house saying, “This is my room, this is the bathroom, here’s the fridge and that’s my mum shooting up her drugs.”

31 Days of Cystic Fibrosis. May 15
Disability Discrimination

Disability discrimination comes in many forms. Often, people create barriers because of what they perceive to be the problem rather than the actual barriers created by disabilities. I’ve experienced disability discrimination in many forms, and I’ve always felt more disabled by society than from my actual limitations.

Possibly the earliest episode I can remember is from my year seven teacher. He was ‘kind’ enough to inform the class that they should be nice to me because I was going to die when I was in hospital, yet also comfortable enough to tell me to, “Go and put your head in a bucket three times and pull it out twice,” when my coughing annoyed him.

The frenemy in high school who blamed all of my achievements on the fact that I had CF, and as a result, I was receiving ‘special treatment’, rather than putting in the hard work.

The job application I passed with flying colours, only to be failed by the company doctor who told me. “I don’t know how you’re still standing, but CF is a childhood disease. You can’t possibly have long left. Why would you want to work anyway?”

Another job interview, “Work and study? That’s a bit ambitious for you. A normal person perhaps, but not you. Study first, work later.” This privileged male, hired his ‘mate’ for the job I had applied for, assuming I would continue to stay on as a volunteer. I did not.

From a medical receptionist at CF clinic. “Thailand? Oh well, I suppose they can always medivac you out. I’ll watch for you on the news.”

Sadly, some of the more recent discrimination I have experienced has come from within the CF community as the cross-infections guidelines tighten.

These are but snapshots, it’s my experience that true equality is a myth, and on more than one occasion, I’ve had to perform to a superior standard in order to be treated as equal to the able bodied. However, there are times when being disabled can be an advantage – I am tough, stubborn and used to fighting to stay alive, I’ve conquered worse foes than discrimination.

Bonus Fact: Despite the fact that CF is not contagious, during flu epidemics like the Swine Flu or the Bird Flu, my superpower was the ability to clear entire supermarket aisles with a single cough.

31 Days of Cystic Fibrosis: Part 4 May 16th – 21th