A little update…

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I’ve been very MIA lately with being in hospital so much. I’m on my third hospital in 4 weeks and yet again i’ve overstayed when i was only meant to be in a few days for tests and investigations. I’m  currently in a lung specialist hospital having full work ups and tests to hopefully get to the bottom of why i’m so chronically ill and in hospital all the time with my asthma. I’ve been poked from every angle but if it means i get some answers to why i’m always so ill and why my asthma medication doesn’t really make a difference.

I’ve come to the point when I just want to really get my life back, yes i’m very positive about my condition and that other people are worse. However, Asthma is meant to be reversable and post attack i should be able to get my life back. I’m now 24, walk with a stick, can barely walk 20 yards, have severe muscle myopathy, brittle bones, can barely make it up stairs, I can’t stand for long, I need special equipment just to have a basic wash… thats just some of it. It’s just too much. I don’t want this to be the rest of my life, I want to get my life back. I want to be able to go running, cycling, long walks with the dogs, enjoy fresh air without the constant anxiety about what if someone starts a fire near by or someone walks past me soaked in perfume and sets my breathing off..

So hopefully, by the end of this I would have had every angle tested and they will have some ideas and some treatment that works. By this point i’m just grateful for anything they come up with. Even just one new answer is better than i had before…

So far i know i’m allergic definately to dogs, dust and grass, I have allergic rhinitis and structural issues with my sinus, they think i have a narrowing in my throat so more cameras down to see, i have thin bones (finally confirmed), i have a fatty liver from the steroids but they aren’t sure on the damage yet so want to do more scans, my heart is okay, then they said my immune system is virtually non existant so they want to see if it’s from an auto immune disorder or if it’s actually from the steroid use. Then i’m getting loads of physio with breathing and then the speech people are helping with things. Then sleep studies etc.. i’m really getting well tested..

The only bad thing so far was getting a canula in for my bubble echo test, 16 attempts it took to get a canula… I’m so desperate to get a port line put in. I just dont know how much more i can cope with it. The idea of going through it all again just makes me want to cry. There is only so many times someone can be poked before it just feels like constant cruelty and if you consider how much i’m in hospital and then after they FINALLY get one in, it barely lasts a day and then i do it all over again the next day. I feel like i’m just at that point when yes having a port may not be the sexiest thing but if it means i can get immediate treatment and i dont have to go through this so much then so be it.

 

So hopefully next week i’ll have more answers and ideas about my breathing and maybe some new meds.. then who knows maybe i can stay out hospital long enough to enjoy life!

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First week in HDU stuck on 60% oxygen and still desaturating…

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2nd hospital had it’s perks being on the 11th floor when i had these views!

 

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Allergy testing!

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