Kylie breathes easy
Until you talk to someone who has lived with cystic fibrosis, you can’t really understand what they mean when they say a walk around the block is cause for celebration.
Last February, for the first time in years, Fernwood Narre Warren member Kylie Alford was able to take a few small steps without the aid of an oxygen tank at her side. A double lung transplant saved her from an incurable, life-threatening illness that left her susceptible to chest infections causing irreversible lung damage, and something as ‘minor’ as a common cold could land her in hospital.
Perhaps Kylie puts it best when she describes how she felt just prior to her transplant: “I basically felt like I was drowning every time I tried to breathe.”
Although as a child her illness didn’t prevent her from participating in sports such as swimming, and hospital visits were rare, around the age of 17 her deteriorating health started to impact heavily on her life. By her twenties, Kylie’s illness really started to hit home. She required hours of daily physiotherapy to remove sputum, or mucous, from her lungs. And she was starting to deal with the emotional side of knowing that lung failure prevents most cystic fibrosis sufferers from living beyond their mid to late thirties.
“I was having a lot of hospital treatments, at least two weeks at a time, being fed antibiotics through an IV drip and undergoing intense physio to clear my lungs,” Kylie explains. “A chest infection or a cold would land me in hospital for four to eight weeks of intense treatment.”
Constant exhaustion meant missing out on normal social activities; even a trip to the movies was a huge drain and involved carrying around her oxygen supply for the few hours she was out.
At home, a tank attached to a 30 foot tube enabled her to move around the house. But tasks like cooking dinner felt like running a marathon. Watching TV was about all she could do, her brain too starved of oxygen to even attempt reading a book.
Doctors talked about putting Kylie on the transplant list, but she didn’t feel emotionally ready for such a life-changing event. By this stage, she experienced days where she would cough up as much as four cups of sputum in a day. Kylie couldn’t even stand up to have a shower and required full-time care. After a common cold sent her back to hospital almost requiring resuscitation, doctors told her that she was going on the transplant list, and it was non-negotiable.
The waiting list
Kylie still had a year to wait before a double lung transplant would be possible, and it was a time filled with mixed emotions. On one hand, a transplant was the one thing encouraging her to hold on and fight for her life. On the other, she knew her second shot at life depended on someone else losing theirs, and on a grieving family making the heart-wrenching decision to donate their loved one’s organs.
“The day I got the call was incredibly emotional. The emotion that goes with receiving a transplant is even more intense than what you experience before receiving one, because you realise what a gift it is,” Kylie says. “Another family has given me the most precious gift I’ll ever get, and you think about what they’re going through.”
A new lease
When Kylie says she intends to make the most of every day, she’s not mincing words. She’s at the gym five days a week and fits a few swimming sessions in on top of that.
She started working out ten days after her transplant in February last year, when her new lungs were functioning at 70 per cent capacity. This March, they hit 100 per cent.
She plans to contest the Australian Transplant Games in Newcastle in swimming later in the year, and relishes every training session that her newfound independence has granted her. “I’ve always had the motivation and drive, so it’s not hard for me to go to the gym five times a week and do the hard yakka.”
A walk to the letterbox to check the mail is a joyous occasion. So is swapping the tracksuit pants she wore while couch-bound for fashionable new clothes, now she has the strength to carry off a pair of heels.
She’s getting married later in the year, and celebrated her engagement party by dancing the night away, in the style of the 21st birthday she never had a chance to enjoy. If anyone knows the importance of seizing the day, Kylie does.
“My partner and I don’t bicker over the little things. Life’s too short to waste time doing that,” she says. “I was told I had a month to live before my transplant. I want to make the most of what time I’ve been given.”
Australia is a world leader in successful organ transplantation, yet it has one of the lowest donation rates in the developed world. Although 79 per cent of Australians are willing to become organ donors (76 per cent agree to tissue donation), less than 60 per cent of families give consent for organ and tissue donation to proceed.
Around 1600 people are on Australian organ transplant waiting lists at any given time and on average, people wait between six months and four years to receive a transplant. In 2011, 1001 Australians were given a new chance at life thanks to 337 organ donors.
Donate Life says the thing that most helps a family’s decision is knowing the wishes of their loved one, and urges people to discuss their wishes with their family. This can save your family from having to make the difficult decision on your behalf during a period of extreme grief. For more information, or to create a personalised message letting your loved ones know your views, visit donatelife.gov.au
*Fernwood client testimonial was achieved as part of an overall healthy diet and exercise plan. Regular exercise and proper diet are necessary to achieve and maintain weight loss. Consult your healthcare professional before beginning any diet or fitness program.