Ain't Easy Being Wheezy!

So we've reached the end of the year and while I haven't posted for a while I thought I would restart with a round-up of the year! Days spent in hospital: 79 (11 weeks, 2 days! The joys!!) HDU stays: 0!!! Down from 3 the year before. Start weight: 329.2lbs End weight: 322lbs (success!) Starting maintenance steroid dose: 35mg prednisolone Ending maintenance steroid dose: 20mg! Current dose: 40mg... (good old viruses) Broken ribs: 2... Cost to the NHS: I dread to think! I survived 2019! Honestly at some points it didn't feel like I would. But not only am I ending the year alive but actually the most well I've been for a couple of years! I finally started immunoglobulin replacement therapy for my immune system in September and to say its helped is a huge understatement. Yes I have to sit around for 2 hours every week with needles in my stomach running my infusion but its a small price to pay to have some of my life back! The last couple of months have be

So its been a while since I posted anything on here really, its been a fairly rough year so far and to be honest I'm pretty bored with spending as much time in hospital as out! (Its not quite that bad, but it certainly feels that way...) I finally had my planned admission at the start of June to try and reduce my steroid dose and just generally find out a bit more about what's going on! I can honestly say I don't think I've ever been so bored!!! At least when I'm unwell with asthma I just want to sleep, but being sat in a side room (thanks immune system...) for 2 weeks when you're feeling well most of the time is something else. But we found my dose limit (20mg of prednisolone for now, but down from 30-40!) and found if I go much lower than that I very quickly drop into a silent chest and desaturate, needing oxygen - so generally a good thing to avoid for now... Also we managed to show airway obstruction on a fancy new test called oscillometry that require

So today is World Asthma Day and it would be very easy to make a post complaining about the symptoms, the medications, the admissions and all of the disruption it causes to my life and others (sorry mum and dad!). Instead I want to take a moment to think about some of the things I'm grateful for. Firstly my friends and family (particularly all my long suffering housemates and my parents!). Without you all there to listen to me moan, keep me company during long hospital admissions and prompt me to seek help when I'm being too stubborn I'd have gone mad (or more mad) long ago! Much as I moan about them and would rattle if you shook me I'm grateful for the incredible medications that just about keep me functioning on a daily basis. Yes, side effects and having to remember them sucks but let's be honest I wouldn't be here without them and medical science is amazing! Also my incredible asthma team (and all the respiratory and emergency staff) at Leicester, they

So its happened, the time has come to say goodbye to xolair! The MDT all agreed that it clearly isn't giving me any benefit anymore in terms of preventing my flares, so we have decided to stop it. Unfortunately I'm already on all the maximum therapy and don't meet the criteria for any other biological treatments so my team have decided to refer me to Birmingham to hopefully undergo bronchial thermoplasty. Bronchial thermoplasty (BT) is a fairly new procedure ( https://www.asthma.org.uk/advice/severe-asthma/treating-severe-asthma/bronchial-thermoplasty/ ) that involves passing a tube down into the lungs and heating it to essentially burn away some of the thickened muscle. I'm not going to lie, it doesn't sound like a particularly pleasant experience and there are definitely risks associated with it, but surely it has to be better than spending a week of every month in hospital on oxygen and IV medication?! My centre is restarting their BT service but apparently b

So thanks to the incredibly mild winter my hayfever season has already started! Which means that I got my wish of wanting to see if xolair would help reduce my symptoms in my main allergy period. Turns out the answer to that is a resounding NO! I've had hayfever symptoms for about 2 weeks and so far have had 1 A&E trip and am currently on day 5 of another holiday in hotel NHS! Yet another attack with a silent chest, IV aminophylline, critical care outreach reviews and oxygen for days - still avoiding the dreaded ITU admission, but to be honest I'm getting bored of skirting the line! I think its probably time to give in and call it quits with the xolair, it helped a bit but its really not doing enough and staying on it is just stopping further treatments and investigations from happening. So we're hoping my clinic appointment can be brought forwards (its currently in about 6/7 weeks time) and that we can get everything pulled together and up to date with one consulta

Current pred dose: 40mg Current weight: 322lbs So it hasn't been the best of starts to the new year. A brief 3 day admission a week or so in following a few allergic reactions led to me catching flu (sadly I was unable to have the jab this year due to my ongoing immune issues and a reaction I had last year!) which, whilst I managed to avoid hospital, did completely knock me out for 10 days or so! My peak flows for this month have looked like a pretty rubbish roller coaster! They've either been at my best, or sat in the red zone at hospital level (ok, so I probably should have been in hospital with the flu, but mentally really couldn't cope with 2 admissions in such quick succession - I did get checked by my GP on day 2 and got some tamiflu though!). So the control I had managed to gain back at the end of last year seems to have vanished once more. And then just as I was getting over that the temperature dropped! So down goes the peak flow again, ending in me walking

Current prednisolone dose: 40mg (boooo) New year weight: 329.2lbs (oops!) So 2018 is finally over! I'm not going to lie, its a year I'm pretty glad to see the back of, with 13 admissions to hospital with severe or life threatening asthma attacks and who knows how many further trips to A&E and the GP with it! It was a pretty difficult year mentally because of this, aside from just coping with the admissions themselves I was pretty low functioning in between them so became quite isolated (although my friends and family were all absolutely amazing in making sure they kept me involved in things!), I gained a lot of weight (between low activity levels, high doses of steroids and eating away my feelings I didn't have much hope there!) and had to suspend my studies because of the amount of time I was spending in hospital. Having said that, now that I finally feel like I'm starting to come out the other side I think its made me a much stronger person (every cloud