15 November 2021
Last week we (virtually) sat down with a young adult with CF and his Mum, to chat about his experience on Trikafta. As you'll read, this story is a little different from those we've shared in the last year. While he maintains a good lung function, Trikafta is treating his severe pancreatitis. And the impact it has had is life changing.
I’m 17, and live in the North Island. I’m a keen basketballer, and next year I plan to move out of home, live in a university hostel and study a Bachelor of Computing and Mathematical Science with Honours.
What did your days look like before you started Trikafta?
In one phrase – my days sucked. Over the last two years, I have had severe pancreatitis which puts me in a huge deal of pain, and lands me in bed for days on end. When I’m having an attack, I’m in agony, can barely get out of bed, let alone getting up with eat dinner with my family – I’d often blackout if I tried. I would be on the highest possible dose of morphine, and that doesn’t even really cut it. I wasn’t able to exercise, work-out, play basketball – all my favourite things were taken away from me. This year I was named the Sports Captain, a leadership position at school, which is such an honour. That tells you how active I was before getting pancreatitis, I was captain of the senior A basketball team. But when my pain came along, I’d put everything into getting to different games and events to support my mates and school. And then I’d be bed-bound, yet again, for another 3 days.
I couldn’t play basketball on morphine, so I would take tramadol instead (which barely touched the sides) and would try to play. On the way home from games I’d be sweating profusely – not from playing, but from the pain.
Mum – He’d have to text me from bed when he needed anything because he physically couldn’t get up without fainting or being doubled over in pain. He couldn’t walk some days – we’d have to take his meals into his bedroom. We couldn’t leave him at home by himself, because he was on so much morphine – the morphine also made him sick, so he was dealing with nausea on top of everything else. Being on morphine also meant he couldn’t drive, and started to lose his independence, as he started needing mum and dad again.
Were you going to school?
I was only really getting to school for small lengths of time, a few days a week. My school attendance was at 15%, and I was relying on the Northern Health School to get me through. They were amazing at keeping me up-to-date with my schooling, and the reason I was able to achieve excellence last year. I also managed to receive a $5k scholarship to go towards my study next year.
My school has been supportive, they even gave me a carpark close to my classes so I didn’t have to walk too far.
How were your lungs?
My lungs are thankfully actually in great condition (which is why I wasn’t not eligible for Managed Access Trikafta). I’ve only had IV antibiotics for my lungs once. My main issue remains with my pancreas.
What treatment could you have for the Pancreatitis?
We were told that there were no surgical options available for me; our choices were a life time of opiates and pain or Symdeko or Trikafta. So we tried Symdeko and that didn’t do anything. We weren’t eligible for Trikafta through Managed Access because my lung function is really good, I didn’t fit the criteria.
Mum - We couldn’t watch our child in absolute agony, living his teenage years in bed, when there was a drug out there that could possibly help. We decided to self-fund Trikafta to see if it was going to be the drug that fixed our teen. And it was!
How quickly did it kick in?
I was out of bed and off morphine in four days. I could see a difference in myself; my pain had eased, I had more energy, and I was eating a whole lot more. I don’t have to do treatments– I’m just taking Trikafta and my vitamin supplements, and back playing sports as my physio.
Did you have any side effects?
I haven’t had any negative side effects, just good ones! Although, if I miss a dose (which has only happened twice), within half a day. I’m back in bed, in agony, and back on pain meds. A good incentive to never forget to take my tablets. That tells us that my pancreas is still very unhappy and inflamed, but the Trikafta is doing its job and keeping it at bay. If I was to come off Trikafta, I undoubtably will immediately go back to where I was before I started it in June, which is a very, very scary thought.
What do your days look like now?
I’m back at school fulltime, my attendance has shot back up to 48% for the year, getting back into sport, playing basketball, and going on a few runs. I can finally use our home gym so I’m exercising frequently. I put on 5kg in a month. I basically feel like I’m “back to normal.”
Mum - He thought he was superman when he went on Trikafta – we tried to tell him it ease into it. He didn’t take our advice; he went and played basketball two days in a row, went on a basketball tournament, and then he crashed. Before this, he’d barely been out of bed in four months. His life is completely different now. Previously he couldn’t join in on family activities, couldn’t see his mates, and didn’t really want to because he was in so much pain, and pain is exhausting.
Have you learnt what your limits are now?
I don’t have limits!
Mum, how do you feel about it all?
We’re ecstatic that there’s something that could fix our boy. Hearing him groan in agony all night, every night was awful – it meant I was also up at night trying to support and look after him, and then also get up and work the next day. Knowing he’s no longer bed-ridden with pain is incredible. When you’re told that opiates for the rest of you son’s life is the only answer, you just can’t have that for your kid. Which is why we looked into self-funding Trikafta – but Trikafta is not an expense our family can sustain for a long amount of time.
Now the stress is.. If the government don’t fund Trikafta, how do you say to your child “sorry, but you have to go back to being in screaming pain.” And tell them they probably can’t attend university, go back to two weekly pain team appointments, regular gastro appointments, regular CF appointments and MRIs, all while we watch our boy slowly decline. Trikafta has meant we’ve been able to cancel his gastro appointments, the pain team appointments, and an appointments with the surgeon because he now no longer requires them.
Trikafta is our sons only option, and we’ve seen first-hand the life changing difference it has made to not only our child’s life, but ours too.