A Day at the Alfred

 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%.

 

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4 thoughts on “A Day at the Alfred

  1. Hi Nardia,
    Your blog is both inspirational and informative. It is wonderful to hear not only your story but also the advice you are providing to the wider CF community.
    I read your blog filled with admiration.
    Warm regards,
    Belinda

    Like

  2. This blog is a great idea Nardia Thanks for all the info . Love your honesty, & the positive energy in your words. Look forward to reading future posts

    Like

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