I receive of dozens of letters from people living with really bad asthma, but this one really touched me, because the person who wrote it….. is only 16 years old.
Read your website have to say it was quite intriguing! Just want to say you are a hero and a role model for me. Quite amazing what you’ve been through and I take my hat off to you dude! I am a 16 year old guy from Victoria BC Canada writing to you from my hospital bed on the pediatric 4d north tower. I also have neutrophillic predominant asthma I used to have eosinophillic asthma as my IGE level was 16,000 ug. Since then it has changed into neutrohilic and harder to take control of – I feel like you. Sorry if that offends you because I know it offends me when people ask me in the hospital what are you here for? and i say asthma they reply with oh yeah my son has asthma blah blah blah when they really have no idea…when I read your website I saw life through my moms eyes Pretty scary since im used to it. But I was wondering did you ever have high IGE at one point and then your lungs like changed into neutrophillic predominant? and like when you walk don’t you get out of breath at all? it was quite amazing how you walked al those miles. And have you ever used oxygen at home? And whats you’re criteria before you get to go home? for me its Q4 Nebs and 50% FEV1 which takes about 2 weeks every admission! WTF such a flipping frustration I’ve never met anyone like me before and I seem to see it in you. I’ve also been to national jewish hospital in america for further evaluation from ” the big shots” . My FEV1 varys from 45- 50% and FVC of 65%.
Drugs – Spiriva ( for copd) have you ever been on it?
Oxygen 1-2L nasal prongs when in hosp
Formorteral (oxeeze) 12mcg
azithromycin antibiotic apparently it helps with inflammation in the airways – that’s what they said in Denver at National Jewish hospital – Have you been there?
Ventolin Nebs Q4
Q30 mins when in hospital.
Prednisone 10mg one day 5mg the next alternating when in hops 60mg for 3 days since i had a steroid myopathy I cant get steroids for a long time because there worried abut that happening again ( Diaphragm paralysis) my diaphragm stopped working which made it hard for me to breath was on Bi pap for 6 months
I HATE PRED!
flutter – Chest physio
IVIG every 3 weeks
I am also getting a bronchoscopy which should tell them more about whats going on, as requested from Denver National jewish.
I’m sorry if im bugging you – just thought your page was really inspiring and something to look up to. Thanks for your time Stephen
No Darcy, thank YOU for YOUR time. It’s people like you who inspire ME ! Your letter made my day.
Thanks for posting that letter steve. I found this guy on facebook through the SARP group. I ahve added him but due to me being rubbish and forgetful have not yet written to them yet.
Hope your doing ok stave and darcy if your reading this comment!
Thank you both, Steve and Darcy for sharing that letter.
A couple of things hit me-not to mention that somebody so young was a) suffering so badly and b) writing about it so eloquently when a lot of 16 yr olds can only text talk.
I was very interested in his citing Steroid Myopathy. That is something I have issues with-particularly muscle wastage in my legs and now the inability to walk very far/ run at all.
His treatment/condition rings of Churg Strauss???-
And of course his using O2- and particularly in my case-the use of 2L oxygen which is now a big part of my treatment ( on overnight O2 now)
Hopefully if he's in the SARP FB group like Olivia says we'll all keep in touch and learn from his experiences.
Always so good to talk. Whata young man he is.