Dum Spiro Spero. -While I breathe I hope.
Last Thursday I had a routine visit at the Alfred Hospital, or as I like to call it “Alfred Spa Resort”, this usually happens every three months. I have been attending the Alfred Hospital or The Royal Children’s Hospital for the past 47 years. Lately due to a bad run with my health I have been going in weekly for this appointment.
Generally I would have a breathing test first (*pulmonary function test- PFT), this measures my lung capacity, and then I would meet with my CF team to discuss the plan moving forward. This includes a review of my medications (all 20 of them). A review of my physio and exercise routine- more specifically how I can stay on track, and a look at my weight and diet. My peg and port are checked, medications collected, future tests planned and a quick hi to the gorgeous 5 East ward nurses and I’m good to go. (This can be a four-five hour appointment).
Until two years ago I have hovered around 40-50% lung function, although to others it may not seem great, it has still allowed me to live a fairly normal life doing the things I enjoy and working full time (a very important part of my life).
This last year has been really difficult with multiply chest infections; my lung function plummeted to a new low of 30% and a weight of 45kg’s(this is not good). After 6 months of I.V antibiotics (3 times a day) and peg feeds most night’s I am now on the improve “well I have gained 3kg’s”. My lung function is sitting at 32% a gain of 6%. I am now waiting to start Orkambi(gene therapy) in the hope that this will be the “next best thing” for me.
*Pulmonary Function Test (PFT) measures your lung capacity. The key data is collected and used to form a picture of your overall lung health. The FEV1 (forced expiratory volume in the first second) is measured in percentages. Most healthy “normal” people taking the test would score between 80-100%.