Sandi Parsons, reader, writer and storyteller.

June 3, 2019 Sandi Parsons 31 Days of Cystic Fibrosis, Cystic Fibrosis

31 Days of Cystic Fibrosis 2019: Part 3 May 10th – 13th

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

31 Days of Cystic Fibrosis. May 10 & 11
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.”

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.”

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.

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

‘B’ Block Sir Charles Gairdner Hospital – Photo by Sonia Sears.

Missed the start?
31 Days of Cystic Fibrosis Part 1 2019 starts here
Part 1 2018 starts here

June 2, 2019June 2, 2019 Sandi Parsons 31 Days of Cystic Fibrosis, Cystic Fibrosis

31 Days of Cystic Fibrosis 2019: Part 2 May 6th – 9th

May 6th – May 9th 2019

31 Days of Cystic Fibrosis. May 6
Kohn Rootsey: A Husband’s Story

John and Kate Rootsey have a normal family life with their six-year-old daughter, Molly. Like any family, they are busy day-to-day taking Molly to her various activities and often go away on holidays – but having a family wasn’t originally part of their plans.

When John met Kate after her double lung transplant, he was unaware of CF and its implications. He asked all the common questions. Kate told him that despite her transplant CF complications remained – in particular in the digestive system , and that due to her transplant the possibility of children was unlikely. Furthermore a life with her would present challenges, but John knew they could face them together.

However, with the blessing of the Lung Transplant team at Prince Charles Hospital, John and Kate embarked on a three-year journey to have Molly. It was new territory for everyone involved; as Kate was the first woman in Queensland to have a baby after a double-lung transplant.
As a high-risk patient, Kate was first required to change her anti-rejection medication. Immunosuppression levels need to be fine-tuned to continue to reduce rejection in the lungs and also be a safe level for foetal development. Their three-year journey contained numerous appointments, blood tests, and two miscarriages. John describes this period as a “Very scary and exciting time, as we weren’t sure how the possible outcomes could affect her.”

Having to deal with so many difficult situations has made Kate an extremely tough person, and John says it makes him not only appreciate both his own and his daughter’s health but also to make the best of any situation.

BONUS FACT: John’s top tip – Do NOT eat like a CFer.

31 Days of Cystic Fibrosis. May 7
Taryn Barret: A Mother’s Story

For the first 24 hours after Connor’s diagnosis with CF, Taryn Barret felt a mix of shock and disbelief. All Taryn knew about CF was “Horror stories, I didn’t think Connor was going to have a good quality of life – I’d look at him and picture the worst.”
Meeting with the CF team at Princess Margaret Hospital was a turning point, and she came to have a better understanding of the disease and its implications. It was after this meeting that Taryn could look at her son and think, “Yes, Connor is going to have a great life.”

To date, Connor hasn’t needed hospitalisation for IV antibiotics. Early on, Taryn established a routine to ensure that treatments were given priority and physio is completed twice a day. This non-negotiable routine has helped with Connor’s compliance regarding physio. “I hope this has attributed to him being really well, and while I know that could change at any point it’s something that works for our family,” Taryn said.

Some people with CF decline earlier than others, and while Taryn is optimistic, the death of a young person from CF always hits hard. In counterbalance, Taryn finds perspective from talking to adults with CF, “They just get on with things and have a positive perspective on life.”

Taryn feels fortunate that Connor has access to the breakthroughs that have been funded by the generations of research done in the past. “I feel like we are really lucky given that now there has been a turning point and there is so much hope for the young kids – particularity with the new Vertex Pharmaceutical medications – we’re not there yet but there is hope.”

Taryn is a committee member for Conquer Cystic Fibrosis; an organisation run entirely by volunteers. Taryn sees the need for research to be the primary focus in the fight against CF. She hopes there could be advancements that will enable Connor to have a long life, and even grow old. Conquer Cystic Fibrosis channels the majority of its fundraising monies into research therefore it was a natural fit for Taryn.

Through her charity work, along with her former work in both journalism as well as working for a Member of Parliament, Taryn is well aware of the power of advocacy. Orkambi is one of the latest medical breakthroughs and among the first of the drugs that treat the underlying causes of CF instead of the symptoms. However, inclusion on the PBS wasn’t automatic. Taryn’s passion for advocacy during the campaign to see Orkambi listed on the PBS saw her awarded the Patron Award for CF Consumer Advocate in 2017 by Cystic Fibrosis Australia.

Taryn, spoke at the Capel Vale Conquer Cystic Fibrosis Grand Ball 2017 – you can hear her speech here.

31 Days of Cystic Fibrosis. May 8 & 9
Chris Rowe: A Father’s Story – In His Own Words

We discovered Lauren had CF on the day she was born. It was an extraordinary 24 hours as we were on a high following her birth until we were told there was a problem. Lauren was transferred to the kid’s hospital for a bowel blockage, surgery and following that we were told by the surgeon to sit down as he had some news, that he was sure the problem causing the blockage was due to CF.

I hadn’t heard about CF, but Shayne (my wife) had and burst into tears. We had a very sick child due to surgery and other issues, then had to contemplate what this meant for the rest of Lauren’s life. Shayne had complications from Lauren’s birth, so we didn’t have much time to think, we said we would take one day at a time and have lived our lives like that ever since.

We pretty much accepted the diagnosis from the start and immediately switched into “what’s the next steps” and focused on how to get over each issue. The impact is strange as we know our family is different from everyone else’s yet I feel most people do not understand our situation. Some people may not understand why we still live in the same house, have not “progressed”. We decided that Shayne would not work so she can be more flexible to help Lauren.

When Lauren was in hospital, I would spend weekends in hospital to give Shayne a break, and your life is pretty much between work and hospital. It has also impacted our family unit with Lauren’s sister having to accept that a lot of the time she is in hospital and of course we have to comfort each other as there are times where we all get concerned about Lauren.

CF is not an acute disease as in when there is a medical issue; it is dealt with and then done. Instead, it’s a constant grind of issues and hospitalisations that Lauren has had to endure over 28 years. There turned out to be complications and surgeries that I hadn’t contemplated apart from the normal two-week hospital “tune-ups” throughout the year and of course the constant concern about her future.

CF is an insidious disease that destroys young people. If I had one wish, I would like to have the power to do something to stop the lung deterioration and actually be able to reverse it. The worst thing as a parent is watching, to not being able to do something to help stop it, you feel powerless, and it is the worse thing seeing your child like this.

As a parent, you can stop a bleeding limb, help give Physio after a broken bone, pay for a trip to Disneyland if someone is sad, but I just wish I had the power to fix CF.

While I would not wish CF on anyone, however, I could not ever see our family being any other way. It has brought us closer than most families. I think the time we spend together due to hospital or illness does this. We sit around and joke, play games and are fairly irreverent when it comes to treatments or issues.

One day the nurse came to our house to pick up “poo” samples which went into a tin like a paint tin. She had dozens in the back of her car from her rounds and one day they exploded just as she was pulled over by the police. Another time when we were staying in the hospital the fire alarm went off. All the parents raced out with their kids, and each of us had our Creon Forte with us – always thinking ahead!

Lauren is a power of strength as well and watching her helping other CF people, and transplant people is inspirational. We may never have seen the strength in ourselves or Lauren or counted our blessings as much if CF wasn’t part of our lives.

***
Lauren Rowe is the founder of a not-for-profit organisation, Gifted Life, which offers support to transplant recipients, helps create support networks and endeavours to raise awareness of organ donation. You can find out more from Gifted Life

Missed the start?
31 Days of Cystic Fibrosis Part 1 2019 starts here
Part 1 2018 starts here

June 2, 2019 Sandi Parsons 31 Days of Cystic Fibrosis, Cystic Fibrosis

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

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.

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.’

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!!

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