CF Clinic

I thought I'd describe for you all what it means to go to clinic. I have been going to clinic every two weeks since I last came out of hospital but thankfully I will be going monthly from now on. Going to clinic isn't so bad, my amazing mummy comes with me but it works out expensive because you have to pay for parking. Do not get me started on the lack of ethics it takes to charge people to park in a hospital where they have no choice but to go. Profiting from othere people loss is what I call it! Anyhoo, anyhoo.

So we get to the Prince Charles Hospital and there is a "terrific" new check in system that in reality takes 3 times longer to do what used to take a few minutes. After checking in you wait until your number gets called to the desk then you are told to get your height and weight done by the volunteers. For those interested I am 162cm tall and 47.9kgs. Then you line up again to be told to go the breathers. So upstairs mummy and I go where we wait in line with a waiting room full of people to be called in one by one. Having a breathing test means breathing into a computerised machine in a certain way and at certain speeds; this measures how much air your lungs can hold, therefore calculating how much air your lungs can't hold probably due to damage or infection. This is all documented in your chart, a file folder with all notes, test results etc that the hospital holds and you are also asked to provide a sputum sample in a jar. I have plenty to spare so I'm never stingy with providing sputum samples!

Then we go downstairs again and line up to give the packet containing my chart and sputum sample to the admin lady then we make ourselves comfortable in the clinic waiting area until we are called in. You rarely have to wait more than a few minutes because the cf nurses are so on top of everything and they know who to expect at clinic therefore they keep an eye out for who is in the waiting room. Mummy and I are then walked into an office and one by one we see each of the cf team to discuss a particular area of my care. For instance this Thursday I saw Angela the dietitian because I have been having trouble with my nasogastric feeds. Then I saw Robyn the physiotherapist to discuss my oxygen generator and exercise tolerance. Next came Anne the social worker to talk about some insurance stuff and then finally my favourite doctor in the world, my Dr Phil. I have been seeing Phil for around 16 years and I couldn't possibly be in better hands. A couple of times I have contacted the clinic urgently, so ill I thought I was going to die and after admitting me I have bounced back, all under the guidance of Phil. I know that I owe my life to him and the rest of the cf team, I don't doubt that for one second.

After seeing Phil mummy and I put my prescription for my medications into the pharmacy, there are around 25 medications for a month so they will take over an hour for them to be ready. Lastly mummy and I go back upstairs again to see Vanessa, another incredible cf nurse, to get some more nasogastric feeding tubes then we go home. Phewww! I was going to say that it sounds worse than it actually is but I have been doing this on average every month for 36 years now so to some people it may be pretty yuk! Apparently when I was a little girl at the Children's Hospital other children would get bored waiting and start misbehaving and running about, but I was happy to just sit in my stroller and watch what everyone else was doing, mummy is very proud to tell everyone what a good little girl I always was.

love

K