Approximately four times a year I spend a whole morning hanging out with the team at the CF clinic. My exact itinerary for the morning varies a little but there are some constants.
1. A coffee. It would be physically impossible for me to enter the hospital without a take-away coffee in hand. There is an individualised force field that bars my entrance if a hot caffeinated beverage is not detected on my person.
2. Getting weighed. The CF team would prefer us all to be on the plump side of average. I don’t think I quite fit that criteria but as long as I’m heavy enough to keep the dietician off my back I’m not too fazed about what the scales say.
3. Spirometry (spiro), lung function or pulmonary function tests (PFT’s). This is a breathing test that calculates what our lung function is compared to what is predicted for someone of the equivalent race, sex, age, height and weight. Let’s start with the good part about doing a spiro – getting to catch up with my favourite physio of all time. After we’ve spent too long chatting and laughing and there’s a queue of people building up behind me we finally get down to business. The not so good part about doing a spiro – is actually doing the spiro. It is exhausting. If my lung function is average to good then I continue to be an exhausted but happy chappy. If it’s lower than I would like – then at the very least it’s time for a second cup of coffee.
4. Texting Dave my spiro results for his congratulation or commiseration.
5. Chatting with my favourite social worker of all time. We get on really well. We talk about anything and everything. I kind of monopolise her time actually. Oops!
6. Waiting, waiting, waiting, waiting for the doctor.
8. Checking Facebook, email, Flickr and WordPress.
9. More waiting, waiting, waiting, waiting for the doctor.
10. Texting Dave that I am STILL waiting.
11. Contemplating a third coffee.
12. Wondering if I will be late for work.
13. Finally! I get to see the doctor. I fill him in on what the last 12 weeks have been like for me, the things that are working, the things that aren’t. I recite my list of medications, my physio and exercise regime (for the 45,000th time). I tell him what I think about my lung function and we discuss the unfortunate fact that there is nothing else to add into my treatment or exercise regime to get my spiro higher. I am maxed out until new medications are developed or approved in Australia. I tell him that this whole treatment and exercise gig is bloody hard work and I’d actually quite like a holiday from it all. He tells me to keep on plodding, to maintain the status quo, to fend off major drops and when I can’t plod any further they’ll get me a transplant. Ah, there it is, the T word – so casually dropped into conversation. Of course, he asks about my Dad. At my very first clinic visit 13 years ago my Dad apparently made a major impression on this doctor and I can’t go through an appointment without updating the doctor about what my Dad is up to. He spends several minutes writing scripts for me. Then, we’re done and I am released!
14. I get my port-a-cath flushed. Although I can flush it myself (and generally do) it’s nice for someone else to stick a needle in me every now and again. Way less mental psyching up required.
15. Optional extras. X-ray, bloods, glucose tolerance test, bone density scan, endocrinology or gastroenterology appointments, ultrasounds, clinical trial visits etc.
16. I say my goodbyes to the various staff.
17. I go down to Pharmacy and realise that the one medication I need NOW was left off the script. I head back up to Level 11 and wait a small eternity to get an additional script written.
18. I wait a slightly longer eternity to get the script filled.
19. I take myself and my meds off to work. Done. For another 12 weeks.