31 Days of Cystic Fibrosis 2019: Part 6 May 24th – 28th

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 24th – May 28th 2019

31 Days of Cystic Fibrosis. May 24
Sixty Five Roses Day

Some dates and celebrations have a special meaning – in May 2011, for me, Sixty Five Roses Day became something more than a day to raise awareness and funds for CF.

Friday, May 27th 2011, started as just another day for me. I knew it was Sixty-Five Roses Day, but I was housebound, dependant on oxygen, and not in any shape to help paint the town red for CF. I was barely able to breathe, despite the oxygen whirling up my nose.

That day changed my life. At 9.30am, I received a call telling me to come to the hospital ASAP, as donated lungs were waiting for me. By 12.20pm, I was prepped and waiting for the last inspection of the donated lungs to take place.

As I lay on the operating table, I thought of many, many things. I ticked off the things on my bucket list I had already accomplished. And I started a new bucket list, for the things I would do. One of the things that sat in both columns was my book, ‘The Mystery of the Sixty-Five Roses’. I’d started writing it back in 2007, and had delivered the completed manuscript to CFWA at the end of 2010. I had indeed written my book. I knew that if I died, my book would continue to go to print.

But I still wanted to hold a printed copy in my hands.

All up, it took six years and a new set of lungs but on February 26th 2013 ‘The Mystery of the Sixty-Five Roses’ was officially launched.

Like Sixty-Five Roses Day, ‘The Mystery of the Sixty-Five Roses’ both creates awareness of CF and raises funds for Cystic Fibrosis WA

31 Days of Cystic Fibrosis. May 25 – 26
Claire Stubber: A Wife’s Story

Claire Stubber met Ian during her first session of pre-transplant gym at the Alfred Hospital. “Like most CFs I know Ian didn’t let on that there was anything wrong with him besides a pretty nasty cough that he couldn’t hide and obviously damaged lungs. I remember his pancreatic enzymes because one of my sisters used to pull the capsule apart anddisperse the spheres as we were sitting and talking.”

“After meeting Ian, one of my sisters decided to do her Year 12 science project on Cystic Fibrosis, and so I learnt a bit more about the genetic mutations then and the physical effects that weren’t that obvious to me at the time.”

Four months after the two met, Ian received his call for transplant. “I was in shock, worried but extremely happy for him. I walked around in a fog for the entire day. When I got to the hospital the next day, one of the staff who knew us both well grabbed my hand and pulled me down two flights of stairs so I could see him in ICU. Ian was sitting up, he looked a bit swollen but very pink, and he had a huge grin on his face. Holding his warm hand was amazing. He only spent 24 hours in ICU; he boasts that was a record.”

“I visited him every day on the ward and saw how quickly he progressed, and despite a faulty epidural and other problems, he was cheerful. I think seeing the process of transplantation first hand was enormously reassuring; I was there the day he had his first and only bout of rejection, he was practically sitting on top of the heater because he was shivering from fever. There were procedures and setbacks that I witnessed that helped me to quickly put things in perspective when they later happened to me.”

Claire received her call for transplant seven months later. At the time, Ian had returned to Perth. “I came around four or five days after my transplant in the ICU, so I woke up to the news that Ian was on his way over. He spent two weeks with me, and it was lovely, I learnt then that he would love me through anything.”

On returning to Perth, Claire experienced health problems. Twelve months went by, and the cause remained mysterious. “My father (a consultant physician) suggested I go to Melbourne for help. We stayed for three months initially, but they identified the problem within days. It seemed a simple decision (apart from leaving loved ones) after that to make the move.”

“I was worried about moving to Melbourne and away from family support when I was hospitalised, but I needn’t have been, I was sick or close to dying for most of last year, and Ian just seemed to know exactly what to do and what I needed when I needed it. Ian introduced me to a world in which there could be wordless communication about how one was feeling and what one had experienced, not just between us but to others, mainly people with CF, who had similar experiences. I seemed to be always accepted as not having CF but still part of the CF community. Luckily there are few times when Ian and I are ill at the same time. I think it makes things easier; we don’t have to explain a lot of things to each other.”

“The physical effects of CF can be horrendous, and transplant does not solve them all, in Ian’s case, it has made most of them more bearable. Ian claims CF as a large part of his identity in a positive way and often points out that his various character traits do have a connection to the fact that he has CF. He showed me so many times how to deal with illness with humour. He very rarely complains. He is generous in many ways and has overcome so much that I am in awe of him.”

The generosity of two courageous families who decided to donate their loved one organs changed both their lives. Combined, the extra time Claire and Ian have been gifted equals 46 years.

Ian is a renowned Cosplay photographer, you can follow him on Instagram

31 Days of Cystic Fibrosis. May 27
Aidan Fraser: A Husband’s Story

Sharon Lawrence I Clinical Nurse Consultant

Statistically, CF patients as a group, have a longer median survival post-transplant compared to other lung transplant recipients. Sharon Lawrence explains the many factors that contribute to this.

“Many people with respiratory problems are referred later in life, and come to end-stage respiratory disease with comorbidity factors. CF patients can be referred any time between the ages of 10 – 50. Although CF patients are living longer and better, and their age to transplant is becoming later, they are still the youngest population of patients that come to transplant.”

“CF patients have life-long managed their illness. When they get to transplant, they understand the reality of changing treatment options from one illness to the treatment options of another. They don’t come to transplant with the expectation of miraculous results.”

“Most CF patients take to complex medications regimes quite well, and although there are somewhere between 10 – 15 medications they need to take, it’s not as aggressive as the medication plan they were on pre-transplant with the nebs and all that chest physio. Treatment is not as onerous- and they get to live their life between morning and evening medications.”

“CF Patients take opportunities they didn’t have before, now that they don’t have the burden of the lung disease component of CF – yes they still have CF, but not the treatment burden that CF lungs require. I enjoy transplant for CF patients because of the benefits and because of what it means to them and also for their families.”

31 Days of Cystic Fibrosis. May 28
Steph Anderson: A Friend’s Story

Steph Anderson and Neely began their friendship in high school. “Neely was always open about her CF. She was coughing one day, quite severely. I asked why? She said quickly. I’ve got CF, and I’ll be dead by the time I’m 27. So I went home, and I googled it.”

As their friendship developed, the pair started hanging out outside of school. “We were at Neely’s house one day after school and Lappa, the physio, showed up and set up the table.” Steph still recalls the shock she felt. “The next thing he’s beating the crap out of her back.”
Steph had health problems also, and on occasion, the pair would even be in PMH at the same time. However, it was when the girls were in their twenties that Steph first noticed the decline in Neely’s health. “Neely started saying she couldn’t go out because was feeling unwell or had landed in hospital. It wasn’t until the subject of organ donation came up that it really hit home.”Five years after Neely’s lung transplant, Steph underwent a kidney transplant. “Neely was a great help explaining the different medications and what side effects came with them.”While Steph’s new kidney was functioning well, Neely was undergoing a tough battle. After surviving bowel cancer and it’s various complications, the medications, Neely required to prevent her lungs from rejecting caused damage to her kidneys.The last year of Neely’s life was an emotional journey. “Me having the healthy kidney, and her needing one, made me feel survivor’s guilt, I wish it was like a liver so I could have shared it with her.”

“I’ve had friends die before, but nothing impacted me like watching Neely. I could do practical things, be there and listen to her. After TAFE I’d go straight to the hospital and leave at 2 am. She fought hard, but she was also my age. I knew she wasn’t going to have a long life, but she should have. She should have had the chance to have children and grow old.”

Steph continues to fundraise for CF, recently participating in the HBF Run for a Reason and selling roses on Sixty Five Roses Day. “I fundraise as a way of working through my grief.”

“The world is a different place without her. Sadder. She’s left a massive, massive hole.”

You can read Neely’s journey in her own words here

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

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