On Mon 28 Feb 22, having had his height, weight and lung function recorded, our day finally arrived and Chester took his first dose of Kaftrio! I was excited and nervous, this was what we had been holding out for, it was a huge deal, that said the worries that it wouldn’t make any significant difference were real! Chester didn’t qualify for the Orkambi and Symkevi rollouts and having suffered a significant decline in health post exacerbation in December 21, which hospitalised him and left him in quite a fragile state, it really was hard not to get over excited and we had to remain grounded. The anticipation of starting this new drug left us feeling overwhelmed, there were so many hopes being pinned on Kaftrio. Kaftrio is a triple combination of drugs that effectively fixes the faulty genes that cause CF, allowing the salt/water to move between cells as they should. Anyway I digress, in the past CF treatments have been mainly preventative, such as chest physio to prevent the build-up of mucus and the use of prophylactic antibiotics to prevent chance of infection, the ultimate aim to prevent irreparable lung damage.
In Chester’s case he has one “ Common” mutation and one that is more rare (DF508/F507Del). There are lots of different mutations in the CFTR gene and each person with CF will have inherited two faulty genes, one from each parent, these aren’t always the same copies. The CFTR mutation allows too much salt and water into cells and results in a build-up of thick, sticky mucus in the body’s tubes and passageways. To help you understand just how revolutionary Kaftrio is….it is definitely worth me explaining (or at the very least trying to explain – bearing in mind I am not a scientist or a doctor) the science behind it…here goes….Cystic Fibrosis is caused by a mutation of the cystic fibrosis transmembrane conductance regulator gene (CFTR), which regulates salt and water transport in the body (measured as sweat chloride). This isn’t a cure and this isn’t the end of his CF, I know there will be the curve ball when we are least expecting it, but for now, we are going to embrace life, enjoy the freedom Kaftrio has given us and I make no apologies about being the “Shouty Proud Mama” on the touchlines screaming and cheering for my child, because I know the sheer grit, strength and determination he has had to show, to get him to this point. I have always been honest, never holding back when admitting just how tough the early years were, when we had to take each day as it came, overcoming each set back as they were thrown at us, and I look back now at the weeks and months we spent in hospital, the endless nebulisers and physio treatments, the sleepless nights and stresses strains and anxieties that CF bought for all of us, and I am so grateful that we now find ourselves with this happier story.
#Embrace the suck meaning full
His health has improved so much that we have even started discussions about having his port-a-cath removed, which will remove even more restrictions for him and will allow him to progress to full contact rugby, which is currently his ultimate goal.
#Embrace the suck meaning free
Now, hoping not to tempt fate, Chester has been admission free for 71 weeks, that’s 16.5 months or almost a year and a half! For us, that is a cause for huge celebration, considering pre-Kaftrio we were averaging 4 weeks a year minimum for admissions into hospital for IV antibiotics. It’s been so life changing that from day to day apart from the morning and evening treatments and his medication with food, we often don’t even think about it, life feels more “ Normal” than it has ever been since his arrival. It’s given Chester the chance to live a relatively normal life, allowing him to get involved with his friends and to take part in activities that once seemed almost impossible. It has given us back the most precious of commodities, time! Not just in terms of life expectancy, but all that time that would have otherwise been spent in hospital or doing treatments. It has quite literally been a life saver! Yesterday was the first anniversary since Chester started Kaftrio and what a year it has been! Kaftrio has simply transformed our lives, none more so than for Chester. With his health all over the place, endless admissions resulting in huge chunks of time out of school, I always had to consider the fact that there would be certain things that were clearly going to be unattainable for him…………….
For me, those are the questions that have always been tough, and I have to admit to actively having avoided thinking about Chester’s future.
0 kommentar(er)
