Praise the Xolair!
So, its been a few months since I wrote anything on here. Mainly because I spent most of July in hospital on HDU!
I've had some pretty rubbish attacks over the last few years (particularly this year!) but this was something else. I felt pretty rubbish but my new house is literally a 5 minute walk from A&E so decided to walk myself over - cue turning up with sats in the 80s, a silent chest and general panic from all the staff! (oops). I don't remember much of it as I was so unwell but vaguely remember a respiratory consultant turning up from ITU there, being immediately started on IV aminophylline (which pretty much never happens in A&E here, they nearly always wait until you reach the respiratory hospital) and being constantly worked on for about 4/5 hours in resus.
By the time they got me to the respiratory hospital many nebs later my chest was still extremely quiet so I went straight off to HDU. I started to improve over the next couple of days but then started to come down with a chest infection, leading to mucus plugging - which is exactly as unpleasant as it sounds! I tried walking to the toilet (about 5m tops!) and something shifted in my chest and completely blocked off my airways and a massive deterioration, extremely suddenly. And to top it all off it was a Sunday, so there weren't many staff around. Thankfully the on call doctor happened to be on the ward already so was there extremely quickly and I'm pretty sure his prompt action is the only reason I didn't end up intubated! The respiratory team thought it was going to be intubation but thankfully by the time the ITU team arrived I'd improved enough to remain on HDU (as essentially the only additional thing they could offer in ITU was intubation) but they still spent about an hour discussing whether they needed to move me up! But all in all I was in for nearly 3 weeks and to be honest it was pretty terrifying - I'm still struggling to remember a lot of it, and I know it can't have been nice for my parents who were there at the time.
Thankfully this admission persuaded my asthma team that it was really time to get going with the xolair injections and I started them on the day I was discharged (July 23rd). I have to go every 2 weeks for them and have 3 injections each time to make up my dose. I'm pretty lucky in that I don't find them particularly painful (nothing compared to ABGs and having bloods taken from feet and knuckles!) and I don't have any side effects at all!
I'm just coming up to the end of my 16 week trial period and although I've still been admitted with severe exacerbations a few times this has reduced massively and the attacks are responding so much better to treatment! I don't know which group of people are responsible for developing xolair but I am eternally grateful to them because more than anything its started to actually give me my life back! I've gone from waking up multiple times a night with symptoms to maybe 3 nights a week, I can now walk about a mile on the flat without any symptoms whereas even a few weeks ago I could only manage a couple of hundred metres. The difference is unbelievable.
I'm still on buckets of steroids and various other pills and my immune system is continuing to be broken (even more so than last time it was checked!) but at the moment I don't care, because for the first time in about a year I actually have some hope that things will get better!
I've had some pretty rubbish attacks over the last few years (particularly this year!) but this was something else. I felt pretty rubbish but my new house is literally a 5 minute walk from A&E so decided to walk myself over - cue turning up with sats in the 80s, a silent chest and general panic from all the staff! (oops). I don't remember much of it as I was so unwell but vaguely remember a respiratory consultant turning up from ITU there, being immediately started on IV aminophylline (which pretty much never happens in A&E here, they nearly always wait until you reach the respiratory hospital) and being constantly worked on for about 4/5 hours in resus.
By the time they got me to the respiratory hospital many nebs later my chest was still extremely quiet so I went straight off to HDU. I started to improve over the next couple of days but then started to come down with a chest infection, leading to mucus plugging - which is exactly as unpleasant as it sounds! I tried walking to the toilet (about 5m tops!) and something shifted in my chest and completely blocked off my airways and a massive deterioration, extremely suddenly. And to top it all off it was a Sunday, so there weren't many staff around. Thankfully the on call doctor happened to be on the ward already so was there extremely quickly and I'm pretty sure his prompt action is the only reason I didn't end up intubated! The respiratory team thought it was going to be intubation but thankfully by the time the ITU team arrived I'd improved enough to remain on HDU (as essentially the only additional thing they could offer in ITU was intubation) but they still spent about an hour discussing whether they needed to move me up! But all in all I was in for nearly 3 weeks and to be honest it was pretty terrifying - I'm still struggling to remember a lot of it, and I know it can't have been nice for my parents who were there at the time.
Thankfully this admission persuaded my asthma team that it was really time to get going with the xolair injections and I started them on the day I was discharged (July 23rd). I have to go every 2 weeks for them and have 3 injections each time to make up my dose. I'm pretty lucky in that I don't find them particularly painful (nothing compared to ABGs and having bloods taken from feet and knuckles!) and I don't have any side effects at all!
I'm just coming up to the end of my 16 week trial period and although I've still been admitted with severe exacerbations a few times this has reduced massively and the attacks are responding so much better to treatment! I don't know which group of people are responsible for developing xolair but I am eternally grateful to them because more than anything its started to actually give me my life back! I've gone from waking up multiple times a night with symptoms to maybe 3 nights a week, I can now walk about a mile on the flat without any symptoms whereas even a few weeks ago I could only manage a couple of hundred metres. The difference is unbelievable.
I'm still on buckets of steroids and various other pills and my immune system is continuing to be broken (even more so than last time it was checked!) but at the moment I don't care, because for the first time in about a year I actually have some hope that things will get better!
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