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Feeling invincible: The battle with cystic fibrosis

Thick, sticky green mucus is repulsive at the best of times, let alone when it’s clogging your heart and lungs. Glenn Tebble struggled with this and more in his inspirational fight against Australia’s number one life-threatening genetic condition. Lisa McLellan finds out more.

Imagine your typical hospital ward. The curtains are drawn, it’s poorly lit and the tiny room is filled with a stifling air of sadness. Imagine a physical exhaustion so complete that you struggle even to raise your head from your heaving chest.

The oxygen mask is strapped tight about your cheeks, fogging and clearing with a steady rhythm. It’s a lifeline, but it doesn’t save you from the feeling of drowning. The huge amounts of thick, sticky mucus clogging your lungs is suffocating and the amount of effort required to draw breath makes the fight seem a little less worth it every time.

This was Glenn Tebble’s reality for 35 years.

At 12 weeks, Glenn was diagnosed with cystic fibrosis; a life threatening genetic condition that causes a build up of obstructive mucus in many of the body’s vital organs. Growing up, he took up to 28 pills a day just to keep his body functioning and was admitted to hospital countless times.

Alienated at school, he made friends with other CF patients in his ward, but explains how difficult it was when “they started dying all around me”. In 1986 and 1987 alone Glenn lost 12 friends to the disease, including a young girl named Cindy, who became his first sweetheart at age 12.

After struggling with a particularly aggressive form of the disease, Cindy passed away at home with Glenn and her family by her side. Glenn says “that was a turning point in my life. It really inspired me to make sure I beat this disease, because this little girl of only 12 was able to teach me the definition of life and the value of it all.”

In adulthood, Glenn fared little better. To date he has had over 100 operations to help keep his body running. Around 20 of these were the slightly unnerving ‘portocath’ procedure which involves “a little instrument which they put under your skin on your chest”.

Connected to the device is a tube that is threaded through a vein leading directly into the heart. This is then used with a needle that stays in your port for over a week in duration to administer Intravenous antibiotics.

Several times during his battle with CF, Glenn was told he had only months to live.

“Trying to articulate your life expectancy is tricky as they don’t really give you set in stone figures,” he says.

However in June 2009, Glenn received some frightening news. Having been on the organ donor waiting list for a double heart and lung transplant for 2 years (nearly twice the average wait), Glenn was told he had less than 3 weeks to live. What had been an urgent situation was fast becoming fatal.

On the 2nd of July, the gift finally came, snatching Glenn from death’s clutches. He says the transplant brought many different emotions, “one of the most important was hope and the other, in the same mouthful, was fear.”

But he has always been supremely positive, even of his dark times.

“I would always put on a smile and chat as if nothing was wrong. It was how I coped…I have always thought about positive gearing, using it as a tool even on my worst of days,” he says.

He explains that he sees life as quality over quantity and “if you get both, well how good would that be?”

It is probably due, in part, to his incredibly optimistic take on life that Glenn makes such a fantastic role model for other CF sufferers. Since March last year he has been working with Cystic Fibrosis Victoria, appearing in the media – most notably in the Herald Sun and on 9am with David & Kim – and helping to raise money so that CFV can help improve the lives of people living with the condition.

“I spend a lot of my time calling all sorts of places and requesting dinner vouchers, weekends away, just prizes in general that we can auction off at our next function.”

Raising money to help others has been good for Glenn; “I loved doing it and it helped keep me focused.”

But money is not enough. Glenn explains that “transplant is the way forward for CF, as it is the closest thing we have to a cure”. There are only around 200 organs donated every year in Australia; one of the lowest rates of donation in the developed world.

But every person that does register to donate their organs can save up to 11 lives, which is why Glenn says “it is so imperative to become a donor”.

As well as his role with CFV, Glenn has begun work with a not-for-profit organisation called Zaidee’s Rainbow Foundation. Homouring the story and memory of a young organ donor named Zaidee Turner, the organisation – established by her parents Allan and Kim – sells rainbow coloured shoe-laces to promote the importance of organ and tissue donation.

On top of all this, Glenn has big plans for the future. Among his most dearest wishes are to be able to wander along the beach with his gorgeous wife Emma without his oxygen mask, to be a father and to turn 50. And, while he says he didn’t picture a career coming out of his hardship, he seems custom built for motivational speaking.

“I hope I can connect with people…In telling my story, I may help a mother who is struggling with her place in life or a husband who is not coping with his recent diagnosis.”

“The end picture is never give up, always keep fighting as life is so amazing and such a gift that you need to fight for it.”

Glenn is going to be on anti-rejection drugs for the rest of his life, but, focusing on the future, he seems fearless, almost invincible.

“When I first met my wife I said to her ‘I get sick and I go to hospital and I get better…I just don’t die.'”

Lisa McLellan is a first year Media Studies student at La Trobe University. Her passion is film and television writing.

For more information about CF or the programs in place to support people living with the disease, visit the Cystic Fibrosis Australia website.

To learn how to become an organ donor, visit the DonateLife website.

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