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30 years ago I was a few months old and the gene for cystic fibrosis was discovered. It was a turning point in research and treatment for the fatal illness, and baby me has been so lucky to be alive because of those advancements.
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The breakthroughs in the last few years with gene modulators offer similar, brighter, hope for the new generation of children with CF. I hope that in the next 30 years people with CF will live healthy lives, free of hospital admissions , IVs, and surgeries. ✌️ Happy birthday CFTR, you little fucker .
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#cysticfibrosis #cfer #cyster #65roses #chelseaspoons
wir freuen uns schon riesig auf die kommenden beiden Tage ! Ein gemeinsamer Wunsch geht nun endlich in Erfüllung wenn ich gleich mit meiner Beauty-Routine durch bin geht‘s ans packen. Sollte aber recht schnell gehen, da wir ja nur eine Nacht in München bleiben :) ich versuche natürlich euch in meiner Story ein bisschen mitzunehmen ☝ stay tuned !
PS: was sagt Ihr zu dem Bild aus unserem 2. Shooting mit @zweitraum_fotografie ? Ich lieeeebe es :) Danke, lieber Chris
Apologies for the radio silence, I’ve been feeling hideous these last 24 hours and just wanted to sleep between all the prodding and poking.
I had a contrast/high resolution CT (chest) scan last night which confirms there’s no blood clot - which we suspected, but needed to be ruled out after forming legs like that of an elephant!
I had some bloods taken last night which discovered I had a high level B-type natriuretic peptide (BNP) in my blood which is an indicator of an issue with the heart. Right-sided heart damage has long been predicted due to how much harder it has to work to compensate my lungs. So this is believed to be the cause of oedema and something else i’ll need to be medicated for to control. An IV injection of Furosemide soon got me peeing it out like a racehorse, unfortunately at the same time I was linked-up to a much needed bag of O+ haemoglobin.
My blood pressure has been incredibly low since the blood transfusion at lunchtime, so spent the afternoon on my new ‘Nippy’ home NIV ventilator which will hopefully give my heart and lungs a bit of a rest at nighttime when home, I’ve just got to learn to sleep in a Darth Vader mask first. There were hopes to squeeze me in over the road at the new Royal Papworth to have a night NIV assessment while I’m an inpatient, but it’s looking to be too long a wait and I don’t want to stay here unnecessarily any longer than I need to.
Just an ultrasound of my heart left to do, possibly another blood transfusion, then hopefully I can think about heading home and nursing my poor cold with Lemsip.
You know I’m not well when I’ve not been on social media all day! I’m hearing incredible things about the raffle on Instagram @raffleforrachel please check it out if you haven’t already. I also know I’ve got over 50+ messages to reply to as well, which I’ll make my way through at some point! Huge huge HUGE THANKS to every single donation, share, love, message, offer of help...You’ve been amazing!
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