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 6th – May 9th 2019
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