Hello all, I have not updated for a long time. Kaftrio/Trikafta is still incredible. I've been struggling a little though and haven't been in the right frame of mind to update until now. #kaftrio #trikafta #cysticfibrosis #adhd
I'm glad to hear you're well, Chris. Why the fuck has your cyst not been dealt with yet??? Hopefully you get back on track soon with the IVF. I've felt we've been getting treated like we are cured! the CF team don't really care nowadays I've had multiple chest infections now that have not been getting treated with IVs. Also my port is blocked, you couldn't make this up. Kaftrio has been really weird for me it's been 2 years and my face has been swelling up I've been getting badly bloated. I honestly feel worse off since I've started Kaftrio 😔 I'm currently waiting for a change up on my doses. Anyway, ramble over. Take it easy, mate & well done on getting a video out. I've been wondering what was happening, haha. 😊
Chris re the shoulder you need to see Julia part of the MSK team at wythenshawe. She worked with me when I prolapsed a disc in my back a few years ago and the woman is a genius 👍
i wonder if this med could treat COPD ? or i wonder if they could play around with the internals of it and come up with any ideas. both my brother and my kids mother have got COPD, and they are really starting to struggle, my brother had to retire from his roofing company after 16 years, now he's doesn't even get out of bed, he's a wreck, he's only 58.
@ChrisVSCysticFibrosis I'm hoping something comes up before it's too late, my brother can't walk very far now so his lungs are quite far gone. I'm not saying nothing about the you know what jab, but my brother and my ex both got the jabs then both got copd at the same time, it's either something is going on or it was just extreme bad luck/coincidence. By the way you sound like a manchester lad, I'm near Stockport, my brother lives in Oldham, I have another brother in blakely.
I feel very similar , I see where your coming from. I find in work I'm overcomplicating tasks .thinking constantly has to be right. What if it's incorrect etc. Also i find we've been given this drug and kind of been forgotten about . The Cf clinic has been so starved of services and were meant to believe kaftrio has cured us yet theres so many other changes like diabetes .mental health .everything about the clinic has lost that family feel before COVID. I too have got a cyst on my forehead your not alone lmao. Everything I get haircut I say leave fringe but long to cover but they always cut it off.😂
Yeah, it's very sad to see the CF units slowly getting facilities taken away from them, which in turn means options are removed from us. My cyst was only taken seriously when I popped it! Grew the bugger for like 2 years. Hopefully in the nicest way possible it pops and you can get it removed! Odd thing to say that really, but that's where we are at. 🤣
I love it when I have my kaftrio, they keep taking it away because of my liver. basturds. yh I struggle with adhd and getting burnt out with work. Im working on trying to go part time soon to help it hope it gets better for ya with work.
Have you had chance to feel anything getting better from it? Or does having breaks reset you each time? Do you have confirmed adhd?If so do you medicate it?
@@ChrisVSCysticFibrosis my gf has confirmed autism, and they share similarities with adhd, considering me an herhave similar symptoms but very different ones also, I assume its mostlikly adhd, the biggest 2 are burnout, and impropper sleep. and I feel like kaftrio diddnt nessiserily make my adhd "worse" but more so without the cf symptoms taking the main focuss anymore I noticed my adhd a lot more. I still have all the same adhd struggles as I did before kaftrio.
