Mad May/little bit of June
So much has happened since my last update.
I had been getting progressively worse breathing wise so on the 11th of may I went to my gps , I knew what they were going to say but you never know I might have been lucky. He didn't even check me over he just rung my local hospital and sent me straight there, however the plus side to this was avoiding a&e and going straight to AAU.
After the general poking and prodding they whisked me into a bay whacked in a cannula and bleeped the respiratory team who came down actually quite fast, and it was decided I was metabolising my tablet medication to quickly so it was ineffective. I was told only to walk to the toilet no where else (like I had the energy) and I was started on iv steroids and Iv aminophyline. Iv aminophyline is a 24 hour drip so I knew I was in for a couple of days. I was to tired to be that bothered to be completely honest. I always get sad as i hate leaving the munchkins but I knew I needed to be there.
Then miracles do happen as I was taken upto the respiratory ward! So rare to get a bed up there the same day you're admitted. ( I later found out it was a ladies bed who was coming in for a scheduled stay to be given certain medication and she was kept in aau for 2 nights thanks to me. whoops)
Anyway I was very excited for my 24 hours to be up, so I could not be attached the whole time and switch back to oral steroids and be gone the next day. Until the Drs came round and said my numbers and the wheeze meant I needed another aminophyline infusion. So that was another fun 24 hours. It makes my heart rate which is always high insnane as well (common side effect) so I was more than ready to be done with it!
Then they made me wait another 24 hours before I was allowed to take oral steroids. I understand why they are so careful with me now but it was frustrating, I felt so much better and just wanted to be home in my bed and I missed the kids so much it wasn't even funny. I always want to leave the second I feel better and even though I know I'm not allowed that quickly I will still be very impatient and probably quite annoying. But the dr promised I could go the next morning if my o2 levels intoved and wheeze stayed away.
This was Monday and I'd been in since Thursday and slept 6 hours I think that whole time. I was exhausted the kids were getting sadder and sadder I wasn't home and my poor husband was losing his mind trying to do everything and work. It's not a long long time I know but steroids give me crazy bad anxiety and I was so on edge the whole time I was there. Worrying about the kids, my husband, the old ladies on my ward were lovely and I got really fond of them but it wasn't enough to make me enjoy my time there.
Any who I drifted of to sleep about 1ish and at 4 woke up and promptly threw up pretty much constantly for 8 hours. Yeah I had noro virus. It took 3 injections of anti sickness to calm it and even then I still puked just not as much and the pain was so bad I wound up being given morphine. (Such a wimp who needs morphine for a bug) the Drs thought I had a twisted bowel because the vomiting and bloating was so extreme until the lab came back saying t was noro. Which got my ward in quarantine. So instead of being home I was in a ball sweating and being gross the rest of the day. I did get home Wednesday though once I could keep my medications down.
I was drained and didn't eat anything but biscuits for 3 days but I was home and I was happy.
Since then I've tired easily. Even now the tiredness is crazy but my chest has been pretty good. I can feel it going down hill as it's waking me at night again but I haven't had to use nebulisers for 3 weeks!Aminophyline always gives me a nice break from the wheeze I know if I climb stairs or walk to much I get out of breath but I don't sound gross. Just hideously unfit. I've managed to my sisters 21st , go to chessington with the kids and Lego land. A wedding and my best friends 30th birthday. I also sat my last exam for uni till October (if I passed) and got my 2 stone loss award 🎉
So it's been hectic and I've not exactly been the life and soul of the party but I have been there and that's the main thing.
Having been admitted to hospital my specialist team were pretty keen to see me. So I saw them yesterday and got told I'm not going to get into the medical trial I was going to be in. And so they want to try me on mepolizumab. If you want to know all about it then there's some good information here
https://www.asthma.org.uk/advice/severe-asthma/treating-severe-asthma/xolair-and-new-treatments/
Or
http://www.healthline.com/drugs/mepolizumab/injectable-solution#Highlights1
I have to be approved to go on to this medication as it's so new so I am waiting to hear if the big men say yes. If they do then I shall get the first injection in the next 2 weeks. I'm cautiously optimistic that this might change my life, it might mean I stay at this level but can take less/no steroids or it might do nothing.
But I'm hoping it will do something. Even if it just gets me off steroids.
So that's about it for now I will update if am approved!
Xx
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