I spent an hour on the phone earlier today (Sunday) trying to speak to an on-call registrar at the hospital about this new problem, only to be passed from department to department. In the end the reg was found but refused to take my call, saying that consults over the phone were not the norm, and I'd need to bring him into a&e - the exact thing I was trying to avoid. They have the winter vomiting virus going round, and we need that like a poke in the eye. So I had to take the plunge and text his consultant directly - I hate bothering her out of hours, and have never needed to before, I'm not entirely sure how I even got her mobile number. But I needn't have worried, she called me shortly after and was so wonderful. This means we can stay home today, just need to rush him in if anything changes (she explained exactly what to look out for, all OK for now) and tomorrow we'll head in and see our own team. She is going to chase up the CT and bloods he needs, more urgently than ever. She also reassured me that I did the right thing, and that the registrar should have taken my call (as per our written instructions from the team about out of hours advice). It is SO HARD to always know the right thing to do.... We've spent hours in a&e with the drunks and the flu-ridden before, only to be sent home wishing we had waited until clinic hours - other doctors are usually reluctant to make any treatment changes without consulting his CF team anyway, so it's just a waste of time. On the other hand, we need to be vigilant about so much more. Especially lately.
This wonderful blog by an adult with CF really struck a chord with me;
'Life’s been really wonderful recently. *knocks on wood'. But there’s also a sadness I can’t shake. The older I get, the harder it is to not become my disease. It’s incredibly important to me to be more than cystic fibrosis, but with each big life event I feel more and more trapped by the hard-to-swallow truths of living with CF. The big one? Knowing a shortened life – one riddled with scary health obstacles – is a strong possibility. As people get older, life gets more complicated, no matter who you are. And when you throw in a life-threatening illness, the complications seem to grow exponentially. It’s a daily struggle to live my life outside of my disease – to not let it seep into each moment of my day. My biggest fear is that it’s changing me. The loneliness… the fear… the what ifs… I’m scared they’re slowly chipping away at who I am. In many ways, having cystic fibrosis has helped me become who I am. It’s made me better, stronger, more empathetic. And I wouldn’t change any of that. But it’s also made me more fearful, less spontaneous, and always worried. There’s this HUGE part of my life that very few people are able to understand. With cystic fibrosis, there’s no break, no day off, no vacation. Every single day there are pills to take, treatments to do, neb cups to wash, scary thoughts to try and ignore.'
It's not me suffering here, but there is a sadness in me because of it, and I'd do anything for it to be me, rather than him. I don't always feel this sad, but it is always there inside.
Please send well-vibes for my boy this Christmas!
