Five Things About Cystic Fibrosis: Medical Teams Are Awesome Beyond Measure
People with cystic fibrosis spend an extraordinary amount of time in hospital, either visiting briefly for a quick once-over in out-patients, or for longer in-patient stays for intensive courses of treatment.
And whatever anyone else says about the NHS, I can confidently say that my medical team are some of my best friends in the world.
There were periods of my life when I spent more time with my CF team than with my friends, when the people I confided in most were my nurses and physios, and when I felt like they were the only people who understood me.
Of course, it goes without saying that without the healthcare they provided, I’d be dead. So that’s also a plus.
When I was 18 I transferred to adult care from my paediatric team in Northampton to the adult unit in Oxford. They call it “transition”, which implies a smooth and calm process, but mine was here one day, there the next — sudden, brutal and very discombobulating.
I knew things would be fine from my first appointment, though: the physio had the same birthday as me (albeit a few years earlier than mine!) and she treated me like an actual person.
She asked how much physio I was doing (correct answer: two to three sessions a day) and when I said, bluntly, “None really,” expecting my head to get chewed off with a lecture about how important it was, she just nodded and made a note. That was it.
When I was going downhill rapidly, I remember sitting in my hospital room with my CF nurse and telling her, “I’m going to have to think about transplant soon, aren’t I?”
She put down my notes, pulled up a chair and we sat and talked about life, death, transplant, treatment options, end-of-life care and a whole load of other things for well over an hour without her once looking at the clock or answering her bleep. She knew what I needed then more than anything was to talk. Three weeks later I was referred for transplant, knowing it was the right move fro me.
“I am part of all that I have met.” Alfred Lord Tennyson
I’ve grown into the person I am today because of the love, support and overwhelming kindness I’ve been shown by my medical teams since I was a child.
The team at Oxford, two of whom are still there almost 15 years on from when I first met them, have played a massive part in shaping my outlook on life and my health, and have managed it all without ever “telling” me what I should be doing.
My CF nurse once asked me four times in a row how I was one day, knowing each time I was putting a gloss on things because I honestly didn’t know what to say. When I finally relented and just said, “Sh*t,” she was able to help me talk through everything I was worried about.
These people are the true heroes of cystic fibrosis.
Living with CF we have no choice but to fight our battle each day. I don’t see that as brave, it’s just life. But these are people who have chosen to dedicate their lives to helping people like me stay alive.
They’ve seen more people pass through their doors and pass away than I care to imagine, and yet they still smile, they still encourage, they still push us to be the best we can be.
Here’s to the doctors, the nurses, the physios, the dietitians, the social workers, the psychologists and everyone else who helps make the NHS such a special place. There aren’t enough boxes of chocolate in the world to adequately say thank you for what you do, or what you have done for me.
This post is part of a series of ‘five things you probably didn’t know about cystic fibrosis’ for CF Week 2016. Find out more about CF at the Cystic Fibrosis Trust website. Find out more about me on my personal website or my Twitter.
Five Things About Cystic Fibrosis: #1 I’m Not Cured
Five Things About Cystic Fibrosis: #2 I Can’t Meet My Friends
Five Things About Cystic Fibrosis: #3 It’s Not Just Physical
If you liked this post, it would mean a lot if you hit Recommend and shared it so that more people can learn something new about CF.
