CF, it is said, is an isolating disease. Cross infection means that people with CF are excluded from things like conferences, where I might meet up with other parents from time to time. It's one of the harder things about CF, much more so for those suffering with it.
Technology means that we can still share our stories though, and when you have a query about that bloody plastic part in your iNeb which pops out all the time, or you have that sinking feeling when the sputum is distinctly green one morning, these are exactly the people I need to talk to. So there are forums, and these tend to be either for people with CF, or parents of those with CF (I never ever thought I would be a forum kinda person!). Although the two can mix.... they don't always do so nicely; There are parents who write things like 'We could cope with another child with CF, so we're trying for a baby!' Or entitle posts 'My child's preschool allowed them to kick through autumn leaves!' shock horror (see previous blogs on these subjects). This tends to piss off some people with CF, as they are better positioned to recognise that having CF is about them, not their parents, and that physically and psychologically being able to enjoy life (particularly as a child when they are well enough to) is so important (just using some common sense about infections risks, as you would with any child). Equally, someone with CF might post about how annoying their Mum is about making them do their nebs (I'm sure Isaac will be soon...).
I don't know why, but I often share the views of more adults with CF, than I do some other parents. I have tried to learn from their experiences with CF, and ask them for advice on how best to handle things at times. And while I haven't met many of them, I do count many as my friends.
But having friends with CF comes with some significant problems, in that they get sick; And sometimes they struggle for a really long time. Sometimes for a short time. And sometimes.... they don't make it.
Emily was one such person. She was a great character on the forums years ago (when I was terrified mother of a poorly baby and needed them more). She was very very sick at that time, and had a double lung transplant at age 22. She did amazingly well after that, and co-founded the charity Live Life Then Give Life (read more here) with her friend Emmie, to raise awareness of the serious lack of organ donors. She was a funny, bubbly and caring lady, and I am so pleased that she got to experience the joy of motherhood (through surrogacy) before she died. She suffered at the end from chronic rejection, pneumonia, and a second transplant came too late.
If you want to help at all, sign up to the organ donor register. Spread the word that you are more likely to need a organ transplant than you ever are to give one. And to make sure you tell your family your wishes before it's too late. Emily had 7 great years thanks to her donor, her legacy is that she has raised awareness so that others might too (as well as her lovely baby daughter).
