My Trikafta story began 4 days ago. I was excited but didn’t want to get too ahead of myself. I had heard reports of Trikafta (called Kaftrio in the UK) making huge positive (mostly) changes and hoped this would be the same for me. For the previous 4-5 months I was on Symkevi and Kalydeco. I noticed a slight difference but nothing to write home about.
So with much trepidation, I took my first two tablets and got on with my day.
Within a few hours I noticed a lot of gunk coming out of my lungs. Cystic Fibrosis causes mucus to build up in the lungs. Sorry for the details but I coughed up loads and normally, I would have had to do hours pf physio to achieve anything near to this “purge”. I began to think this drug might just work for me.
Today, 4 days later, I checked my lung function for the first time and my results were astounding. My lung function has increased by around 25%. It’s hard to believe after so many years of struggling to breathe. I didn’t realise quite how much I struggled until I was able to breathe again.
My mother passed away from Cystic Fibrosis related problems in 2000 and it would have been wonderful if she could’ve benefitted too.
I have been receiving emails from the CF clinic advising of changes. Women with CF are now falling pregnant unexpectedly. Before falling pregnant was impossible due to such poor health but Trikafta is resulting in women with CF being so well that they are now able to fall pregnant.
Cystic Fibrosis also affects the digestive system
Trikafta is easing digestive issues as well. The pancreas is affected due to Cystic Fibrosis and Trikafta is working on that too. This drug really is incredible. I can’t imagine how the scientists at Vertex (the company that produces and created Trikafta) figured this out. How two tablets can get into the body and work at a cellular level to repair the underlying disease is just dumbfounding. This drug is the first that works at a cellular level to open the cellular chloride channels instead of only managing the symptoms.
Life-changing Trikafta (Kaftrio)
I have more energy, I can feel the air getting deeper into my lungs. It has been six years since I was able to achieve the same lung function results and that happened only once that year after a two-week stint in hospital on intravenous drugs.
Normally, when I get a cold I end up in the hospital for two weeks on intravenous medication. My body is just unable to fight off the infection. A cold for me means a major interruption to my life. Now, I am hoping that I will recover without much trouble. This would be fantastic. IV’s affect my mental health and a PICC line is extremely painful. Being in hospital is a constant reminder of my unpredictable health and issues. Too many PICC lines have resulted in blood clots on both my arms and I was at the stage where any future IV’s would have been an issue to due limited access options.
Last year I spent a solid month in hospital on an isolation ward because I had contracted Mycobacterium Abscessus – a bacteria that is notoriously difficult to eradicate. I wasn’t allowed on the usual CF ward due to possible cross-infection and was kept away from the CF ward for over a year. I think I got the bug when I travelled to Thailand two months prior. The drugs made me severely ill (they are similar to the drugs used in chemotherapy) and I suffered from depression during that month. It also put a strain on my relationship with my partner. Every month thereafter came the nerve wracking test to check whether the Abscessus had returned. So far, I have been negative but it adds a layer of insecurity as well as the threat of being put back in hospital for a month with very little notice.
My partner commented that it would stress him out listening to my breathing at night because I would take short shallow breaths as if I wasn’t getting enough oxygen. Now, since starting the Trikafta, he said he has noticed that I am breathing more deeply and seem more peaceful when I sleep. That was great to hear!
I am crossing fingers that I continue to feel well. Trikafta (Kaftrio) isn’t great my for liver and I am on Ursodeoxycholic acid to help my poor liver cope with the added strain of processing Trikafta.
To all those others on Trikafta/Kaftrio or waiting for it – I hope this drug works as well for you. This is changing my life for the better. So far so good!
After 10 days on Trikafta I had severe abdominal pain. It was so severe that I threw up on the first day. Thankfully, after 10 days it disappeared. It’s now been three weeks since I started and I am getting spots on my chin. Have had clear skin for many years so this is new. Still – I am NOT complaining. It feels so good to be able to breathe.