I was diagnosed with CF, a hidden disability, when I was 4 months old and I am now 31 (nearly 32).
My parents had never heard of CF before I was diagnosed and back then the survival rates were not as good as they are now (with the significant changes in treatments). I had double pneumonia when I was 4 and it is such a vivid memory for me - I remember having my line put in by Dr Jeremy and then being in the first bed next to the nurse’s station. I don’t know why but it is always a time that has stuck with me for all these years.
I went to primary school, high school and then eventually university. My health was up and down with periods of severity, one being when I was 10 and my lung function and weight dropped dramatically and unfortunately my lung function never recovered. However, I have been able to carry on doing what I have wanted to (with quite a few hospital admissions in between).
I am now 31 and my daily treatment routine begins around 7am where I take my inhalers. I then do DNAse which helps to break up the mucus in my lungs and after that I take nebulised hypertonic saline which further breaks up the mucus and I then do my physio which consists of a breathing technique called Autogenic Drainage (AD) which involves using different breathing speeds and depths to expel mucus. For me, it takes about 30-45 minutes to complete a session. I then take an inhaled antibiotic. It is then on to my morning tablets with my breakfast as I need to have fat for my tablets to be properly absorbed. If I am going out, I will use oxygen as my oxygen saturation can go down if I walk, so the supplemental oxygen helps this and keeps my saturations in a safe range.
Throughout the day I take more tablets including vitamins as CF bodies don’t absorb vitamins very well. Whenever I eat too, I have to take Creon which is a pancreatic enzyme which helps to break down food into carbohydrates, proteins and fats that my body can then use. I have taken these for as long as I remember and they used to be mixed in with baby food when I was younger!
In the evening my routine starts again with hypertonic saline, physio and then my inhaled antibiotic.
Before bed I then take my night time tablets and have a snack to get the fat needed for taking my tablets.
Overnight I then have non-invasive ventilation to keep my carbon dioxide levels in range and to help me breathe better when I’m sleeping. I also have overnight feeds which provide me with nutrients overnight delivered through my feeding button in my stomach which helps to maintain my weight.
It then all starts again the next day.
Would love to share more 'day-in-the-life'from our incredible community- drop me an email at firstname.lastname@example.org.