Fighting against the odds - Paul's CF story - CF Buzz


paul-rappa-scramble-cahill  by Paul Rappa-scramble Cahill

I was born into this world not knowing who I am or why I’m here.

Doctors ran tests on me and I tested positive for cystic fibrosis (CF). Not knowing what CF was my parents began talking to doctors and specialists about the condition. I was rested in my mother’s arms  six weeks after being born when I suddenly stopped breathing.

As time went on and my condition worsened, I spent more life in hospital than I did in school. At the age of five I joined a local Taekwondo club and when I wasn’t in hospital or school I was in the club training.

At the age of five my family had noticed that my skin and eyes were starting to turn a yellow colour. After having tests done the doctor told my family I had liver failure, and without a new one life was surely to be very short.

After many tests and specialists appointments I was put on the waiting list for a liver transplant… two years later at the age of 6 I received the call that they have a new liver for me and time was imminent.

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I was rushed to Westmead Children’s Hospital to get ready and then transported to Royal Prince Alfred Hospital where I underwent a 14 hour operation, making me the third child with Cystic Fibrosis in Australia to receive a liver transplant.

After the operation I was taken to an isolated room in I.C.U where surgeons left my body open unstitched due to extreme swelling. After two days I was stapled (yes stapled not stitched) up and taken back to a recovery ward as I was still unconscious from the surgery.

The night I came to, the nurses had called my parents and my mom came up to my ward in the middle of the night. My first words from waking up were “I need a drink!”

Overall I had spent a few months in hospital.

As the years went on, so did life with CF, and even though I had spent so much time in hospital I was still eager to get back into my martial arts training.

Four years later in 1999 around August, I had been having such bad abdominal pain to the point where I was vomiting and laying on the floor in pain. Anything I ate or drank would come straight back up, so back to the hospital I went.

Doctors tried all kinds of enemas and drugs but never had any luck to solving the problem, so I went to have a CT Scan and discovered I had a bowel blockage as thick as cement and no matter what the doctors tried it wouldn’t budge. I couldn’t eat, I couldn’t drink, I was drip fed on fluids for weeks on end still withering away, the only solution was to operate but at a risk.

If the operation doesn’t go as planned I would not survive another 8 weeks, so they took me to theatre, knocked me out and operated for 8 hours, in the end they had to remove 40cms off my bowel, and it was a success.

Doctors had told my family that my chance of survival was at a really low percentage and to brace for the worst. The next few months in hospital I had to be taught how to eat again, and due to not being able to walk I was taught how to walk again….. life was looking so much better than what I had battled through….

As the years continued on I went through many more hospital admissions due to cystic fibrosis, but it’s a general thing that all CFers must do in their life.

It’s what specialists and people with CF (CFers) call “a tune up”, where we go into hospital for two weeks on Intravenous Antibiotics due to a chest infection. It happens between one to five times a year but it depends on the persons health.

Training martial arts has always had an impact on my health for great reasons. In April in 2004, due to CF stunting your growth and nutritional needs, I needed a feeding tube put in, which is what they call a “button.” It sits inside the stomach but you can access it from the outside of your stomach. It’s used to pump liquid foods into you while you sleep, it is a bag that hangs above the bed with a tube that connects to the button and is pumped through by a machine.

I had my button for four years. Even though I had my button I was still training, and I had switched from taekwondo to Muay Thai.

In 2006 I went into hospital for “a tune up” and was prescribed a drug called Prednisone that many CFers take today.

But something was different?

I had this uncontrollable thirst to just drink whatever I could as soon as I could. Doctors told me that prednisone could make your blood sugar levels rise a bit, which is the same thing that happens to diabetics.

 Training martial arts has always had an impact on my health for great reasons.

After some blood tests they found that I have Cystic Fibrosis Related Diabetes (CFRD) which is actually very different to diabetes type one or type two but is insulin dependent.

That’s when I felt like life was just trying to make me quick life and give up, end it all.

When I found out I had diabetes I became completely non-compliant with medications and even with life. I didn’t want this condition and I didn’t want to know that I had it. Many times I ended up in hospital due to badly controlled diabetes. For nearly two years I was non-compliant.

In 2008 I starting becoming more compliant with my medications and kept on training martial arts even when times seemed so hard to get through.

I still stuck it out, my doctors had discussed possibly having a lung transplant in the near future. It that was a shock for me because my body and mind had battled through so much already, I don’t know if it could take another big hit like that.

So I began getting on top of everything from simple inhalers to insulin injections and physical exercise, training more and making myself right.

Two years later in 2010 I joined a martial arts club called Grupo Capoeira Brazil.

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Capoeira is a martial art that uses music and dance-like moves in a way to stay fit, keep positive, and grow confidence.

It has had such a huge impact on me and my health that it has now almost become like an everyday thing, and the more I continue doing it, the more I love it.

In February 2012 I entered myself in the National All Styles Martial Arts Championships, and after a whole day of competing, I walked out holding a 3rd place trophy.

A year later something happened!

I had even started calling my family telling them I love them and saying my last goodbyes.

I was bleeding and it was coming out from my backside every time I went to the bathroom. So I went to the hospital and had bloods taken and tests done and found out that I was bleeding internally, losing about a bottle of blood a day the doctor told me.

I had 12 blood transfusions and they wanted to try something that hadn’t been done before at the hospital (Royal Prince Alfred).

They took me to theatre to look inside for the cause of the bleeding and found that my portal vein had been blocked, and due to rapid blood pressure a blood vessel burst.

So the doctors placed a 2mm stint in my portal vein to open it up. Afterwards I went into I.C.U and realized that I was still bleeding and had the surgeons take a look. After a CT Scan they said the stint placement hadn’t worked and wanted to try it again, but this time they placed another stint against the first one and it was a success!.

I had never lost so much blood nor had I ever looked so ghostly white before. I was certain that this time was going to be my last! I had even started calling my family telling them I love them and saying my goodbye

In the end everything turned out for the best, and in 2014 I entered myself into the National All Styles Martial Arts Championship again, and after a long day of competitors, I walked out with a silver medal around my neck holding 2nd place.

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Even the hardest of times are the best of times because it teaches you more about yourself, and what you’re capable of overcoming.

To this day I teach martial arts and I still train in Capoeira; the whole team is basically family. I also currently make and write music and record as a rapper with my rap name CRYTICAL P with tracks online, and recently started designing and selling T-Shirts.

The moral of my story is… even the hardest of times are the best of times because it teaches you more about yourself, and what you’re capable of overcoming.



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