Hi! My name is Meesha, I’m 11 years old, weigh 29.9 kgs, and I have cystic fibrosis. My lung function is 36%. I recently found that I was eligible for Trikafta on compassionate grounds and I wanted to share my journey with others. I’ve been waiting for this for so long and am so excited to start my journey.
Day 1
Giving thanks and saying goodbye to Orkambi (pink pills) for stabilising my CF.I’m also so grateful that I have Trikafta!! As my auntie said, it’s Happy Trikafta Day! I swallowed my two morning pills at 7:30am. Details to come …
Day 2
So last night was my first night and full dose on Trikafta and it was a little scary! Before falling asleep, I was having a really productive cough but managed to sleep. I woke up in the middle of the night with a coughing fit. This isn’t unusual for me, but it hasn’t happened in a while. I coughed until I threw up (luckily, mum had a vomit bag handy) BUT there was lots of bright red blood in my vomit and sputum. It was really scary because this has never happened before. I do have a chest infection (stenotrophomonas) at the moment as well. I fell back asleep and didn’t cough much after that.
Day 3
I’m feeling better today. I’m still out of breath, but I have more energy. I slept well and didn’t cough too much or vomit!
Day 4
Just had my morning dose. I had another great night and feel good so far.
Day 5
Last night when I was sleeping, I started coughing and vomited everywhere! (Sorry mum!) During the day, I had terrible tummy pains and heartburn. My diabetes is still the same, no real change. I’m not coughing as much during the day and sometimes it’s dry. I don’t have a heavy tight chest anymore either. I forgot to mention a few days ago, when I was coughing lots, my peg (the feeding tube in my stomach) starting bleeding but it wasn’t too bad. I’m going to a CF clinic appointment tomorrow so I should have more details and maybe a new lung function result. Stay tuned!
Day 6 (diary entry by Meesha’s mum)
Ups and downs!! Today has been a day full of terribly bad stomach pains, to the point of tears! She can’t do anything and is fidgety with pain. But on the bright side she had her lung function test today and it was amazing!
Normally she gets very tired after doing one test, let alone three in a row (they do three and take the best one). However, today she almost did the tests effortlessly. She didn’t lose her breath, didn’t have a coughing fit afterwards and didn’t tire. She felt like should could take a deeper breath than usual. Her results were: Test 1 FEV1 47%Test 2 FEV1 49%Test 3 FEV1 52%That’s 52%!!! She was 36% 6 days ago!!! It’s exciting to see some results but it’s hard to celebrate as she’s in debilitating pain.
Day 8 (diary entry by Meesha’s mum)
It’s been a long few days. Meesha has been riddled with stomach pains for four days now. Not knowing what it is has been hard. A potential intestinal block from Trikafta, or just CF, or new Trikafta side effects! She vomited again yesterday afternoon, but somehow had a burst of energy and played some basketball. The night was tough, with her not able to sleep with all the pain. This morning she seems to have turned the corner. She’s definitely not 100% but she’s also not in agony. Hoping this improvement continues.
Day 12
Finally, after seven days, I don’t have any tummy pains. I have lots of energy and feel great!
Day 15
I’ve been feeling incredible!! I have SO much energy and I’m doing things I haven’t done in years! I love dancing but in the last two years or so, it’s been hard to dance for long periods. It’s the same with cartwheels. I think it’s been even longer than two years since I’ve been able to do one cartwheel, let alone more. But now, I can dance, do lots of cartwheels, jump on the tramp for a long time and not have a violent coughing fit, throw up or get so out of breath I can’t breathe. I can take deep breaths. I never knew I could do that or what it felt like!!!I feel like I’m a different person. I’m not tired anymore and can play all day long. I’m also eating little bits too! I never did that. I ate a roll, chocolate egg and crackers and “fancy cheese” (Brie) as I like to call it, all in one day. Most days I ate nothing, literally nothing. My mom is so happy Best news today is my lung function (fev1) is 56%!!!
No wonder I feel so great!!
This is the highest it’s ever been!!!!
I hope all people with CF get to feel like this!!
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
