Fuck.
I know CFers generally end up with this as it's scar tissue, and we cough a hell of a lot/have lots of infections which causes scar tissue and all that fun stuff.
I didn't think my lungs had gotten to that point though. I mean, I saw my last xray, and sure, there was loads of apparent scar tissue all over these damn lungs. But bronchiectasis? The label makes it seem worse.
I'm over reacting, clearly. What I'm pissed about is that I wanted to increase my LF. I'm at 70% at the moment, which is still pretty damn good. But I wanted to have a ridiculous increase. I don't care how stupid that sounds. Bronchiectasis means it's hard to have an increase seeing as your airways are fucked to hell.
God. CF scares me. It honestly does. Random chest pains, coughing SO much, not being able to sleep, being so short of breath you don't even want to think about walking up those stairs... and now fucked up lungs. Even more so.
I just need to suck it up and deal with it. Stop being such a wuss. Really. Grow the fuck up and stop wining about every. little. thing.
I'm still pissed though.
Anyway. I found out I have the joy of diffuse bronchiectasis through the letter that my Dr sends to my GP recounting my latest appt (seeing as I don't exactly understand what people say, I just wait for this letter to find out what happened). This letter also had my blood test results from my annual review. They all look good. Both my RAST and IgE levels have gone down some since they last checked them, which I'm happy about.
Dammit. I have to stop reading this letter. I know I have CF, and pseudo, and Aspergillius, but this damn letter makes it just seem that more terrifying. Seriously:
'She has significant cystic fibrosis lung disease with diffuse bronchiectasis on chest xray and chronic pseudomonas aeruginosa lung infection with associated allergic aspergillosis.'
If Cfers weren't living medical dictionaries, I wouldn't understand a word of that. And maybe then it wouldn't bother me so much. Unfortunately I DO understand it.
Oh well. Like I said. I'll deal with it.
Somehow.
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First and last of 2018
Oh dear. I think this is a new record, one post for the entire year (Technically. I wrote on 1.1.18 but its likely I wrote it a few days bef...
3 comments:
Thinking of you Meg!
x
I'm so sorry girl. I know it sucks...I don't have the aspergillus, but got everything else. At our transplant center, they call is "chronic rejection." I've supposedly had it for several years, but my xray still looks decent. Have they talked about doing any treatments???? I did 2 rounds of photopheresis (which is one form of treatment for it). There are a few others as well...my team put me on a 3rd immunosuppresent as well as Azithromycin Mon, Wed, Friday for the rest of my life. Just a thought...maybe something to ask.
I'm amazed that your lung function is at 70%...and even though your lungs are scarred...it doesn't mean you can't increase it....promise. Mine have bounced around and I know multiple people who underwent the "photo" treatments had increase in their lung functions.
It will all be fine..PROMISE! Just take extra good care of yourself (stay away from germs)!!! Keep smiling! I'll be praying for you.
You know what, girl? It's not whining; it's Dealing With It. But even if it were whining, gawd knows you'd be more than entitled to do it. Get angry. Be pissed off. Keep blogging. Get it out there. It's not a sign of weakness; it's a sign of being big enough and hard enough and brave enough and fabulous enough to tell it like it is. MASSIVE cyberhug. xx
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