Warning long post!
Hi, hope everyone is well. This
So here I approach my 1 year on Benra anniversary. It hasn’t been a smooth ride that’s for sure, and the ride leading up to it was incredibly bumpy. But with the current situation I have had lots of time to reflect a celebrate the milestones, no matter how little in order to look forward to the year ahead! Multiple hospital admissions before being approved of benra, constant steroids and long term sick leave from the job that I love. This all started in October 2019, and no one could have predicted where we would be today! Well looking as my past history you could of probably put money on it - yes I’m currently admitted with some ongoing issues related to my asthma, consistent high FeNo’s despite steroids. Add to the mix this weather we are experiencing in London and it all makes for grumpy lungs. There is a great Asthma team at my local hospital - I may be slightly biased as I work here, and they keep me under their radar while not officially managing my care. I’m also under a tertiary team and severe chest clinic which in all honesty I have found to be not so great, not being ungrateful, however I don’t always feel listened to as a patient - and being a qualified nurse somehow it makes me even more inferior. Since starting the benra, I have had a vast improvement in my symptoms but there are still problems, however my team/consultant seem to brush them away. After starting benra i quickly switched to self administration and I had 4 months of no admissions, yes I was shielding too, but considering I had been admitted 12 times from October to February, each admission at least 1 week long. This felt like a massive milestone and one to be celebrated. Throughout the initial lockdown, I was able to spend time with my son, cook with him, play board games with him etc etc, for an Autistic teenager who’s routines has been completely changed being there was important. My good run came to an end in July when some fat in my oven had dripped to the base (electric oven) and as I opened the door I inhaled so much smoke I was instantly struggling, I was blue lighted to hospital and ended up in ITU in an infusion of salbutamol. Following my discharge - a week later, I was readmitted 2 more times with ongoing symptoms. I then had a follow up with my consultant who proceeded to tell me that I didn’t really need ITU, and he didn’t see why I was still having symptoms. So arranged for me to attend a face to face appointment and carry out some tests. Lung function had decreased to 65%, FeNo was high but bloods looked ok. None of these admissions had been treated with a course of steroids, just stat doses and then my usual hydrocortisone for adrenal fatigue. I spent a lovely August time, spending time with my family and after 40+ weeks away from work, I had been redeployed to a low risk area and went back to work. 4 weeks later whilst attending the tertiary hospital for a barium procedure, unfortunately I had a reaction to the barium they gave me and I ended up being admitted there - considering my constant always said if I could I should go there he couldn’t moan! I only saw the respiratory team twice during the admission once was to carry out some test on a new fangled machine they’ve got and the second time was to say they didn’t know why I was still there and I should go home! Still having allergic reactions and needing nebs! So I was discharged very quickly, and then the team decided that due to my admission- which had a clear focus, I should stop self administering and go there every 8 weeks for my injection so the can monitor me. I have no problem doing that, it’s a bit of a pain trying to change shift around, but I went and was literally stood over and watched while I did my injection - it made me feel like they didn’t believe I was complying at home! They monitor my bloods and FeNo’s which have been in the 60-80 range - and have never suggested an add on treatment. Fast forward to now, I’ve been off maintenance steroids since June 2020, and my arsenals began to function and I was able to stop the hydrocortisone in December. 2 little milestones there! After another 4 months of no admissions spending Christmas and new year at home, and again shielding. I am currently admitted with increasing asthma symptoms which were not improving with my management at home and My second course of steroids in 2 weeks. My FeNo today has improved to 30, however after 4 days of steroids the consultant expected it to be a lot lower! But hey it’s a blip in the road that is becoming less bumpy as time goes on! I’ve had a pretty crappy 18 months and it’s easy to look at all the sh*tty things that have happened and dwell on them. But it’s important that we look at and recognise our achievements set our self little goals (mine set to me by my physio was to do 3000 steps a day) not quiet achieved that yet but had started working on it!
New to biologics - don't feel particularly well.
Anybody complained about GP?
Tapering off inhaled steroids due to steroid induced adrenal insufficiency
Recovering after hospital stay
