help give my lungs another chance

hi, my name is Summer. i am thirteen years old and i have cystic fibrosis.

for those who don’t know, cystic fibrosis is a genetic chronic and sometimes terminal health condition that affects the lungs with thick sticky mucus, making it hard to breath.

my lungs are at their worse currently at 34% lung function, i have two infections right now. they are called Pseudomonas aeruginosa, and Nontuberculous mycobacterial.

Pseudomonas is a common lung infection with people with cystic fibrosis and are groups of bacteria that form in environments. The bacteria thrive most in Moist areas, Humidifiers, Kitchens, Bathrooms, Pools, Mould, Hot Tubs and sinks.

i first had Pseudomonas when i was six years old, and was in hospital for two weeks with IV antibiotics. The next time i had it was long later when i was twelve. i got the infection and my first course of treatment was a six month plan of extra nebulisers such as Promixin, and Ciprofloxaxin. This didn’t work to get rid of the infection so once again, i went into hospital for two weeks. i got it again in march and since then i haven’t been able to get rid of it.

Nontuberculous mycobacterial is an infection that’s more serious and could take more than two years of treatment to get rid off. it is found in soil, water, and on wild animals both tame and wild. This infection keeps your Lung function down as a symptom. this is the first time i’ve had it.

On the 13th of July, i went into hospital to treat my Pseudomonas for what was meant to be two weeks as usual. i went into hospital with 41% lung function, and after ten days my lungs weren’t responding to treatment. they even got worse and gone down to 33% function. I had an emergency procedure on the 27th of july, having a bronchoscopy. they found a lot of mucus in my lungs and sent it to the lab to grow so they could see what it was. i ended up getting diagnosed with Nontuberculous mycobacterial, but had to wait five more weeks for them to see tne full results. i got discharged on the 4th of august as there was nothing they could do until the results came in (they didn’t come in until late august).

physio has been a vital part of bringing up mucus since i was 5 years old, and it would work. but ever since i was 11 it stopped helping me and i slowly given up on it. now it does nothing but make me short of breath. physio is a breathing exercise i do. it consists of a hundred breaths in a Pep mask (a mask which is hard to breath in), two times a day.

while i was in hospital, i used a machine called The Bird. it was a different kind of Physio that really did help me, but i couldn’t take it home as it was hospitals property. the Closest thing to The Bird is an Afflovest. an Afflovest is a peice of machine that helps treat illnesses such as cystic fibrosis and others. it shakes my lungs go clear the mucus and makes me breath easier, but it isn’t a part of the NHS. the price of a fully working one is around £13,000 and me and my family are low income and can’t afford this much. I have never asked for random strangers to donate money before and i hate to actually do it, but i wake up every day feeling breathless. even the smallest amount to help me buy this would help, as i’m not sure my lungs can take much more of this. thank you for reading about my situation.