Thought I would introduce myself. My names Martin, I am 41 and I suffer from severe astma. Its sucks
I have joined here so I can talk to others and not feel so alone. I live just outside Basingstoke but travel to Heartlands hos in Birmingham for treatment.
I have regular trips to my local RESUS and local A and E. The whole of the NHS has been so kind to me.
My astma started in 2014. I floated around the NHS system until i was taken under Heartlands care. Dr Mansor and Lisa etc have been great.
I've had Bronco Thermoplasty. This gave me.a good two years but it's starting to slip back. I am trying a MAB drug to see if that helps.
I also see a physio and psychologist. The psychologist has had a profound effect on me.
So HI.
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Larrythelathe
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Sorry that you are struggling so much with your asthma, I hope that you get some ease from the MAB drug.
Asthma is not my primary lung condition but I have learnt so much from members of this forum since joining.
Hi Martin and welcome. I was diagnosed with severe refractory eosinophilic asthma in 2013 after winding up in resus where they could not get my airways open and said I had acidosis..which they told my husband would lead to multiple organ failure as no amount of aminophylline was helping. I’d also had back to back nebulisers and magnesium earlier but nothing had helped.
After several years post diagnosis of SREA and countless corticosteroids etc I developed bilateral posterior subcapsular cataracts and had to have cataract surgery done privately as the NHS waiting list was over 2 years.
After having had numerous chest infections including pneumonia & collapsed lungs several times I was finally commenced on one of the biological treatments several months ago.
Despite having the flu shot every year since asthma diagnosis in 2013 both my husband and I had that awful flu and now have what our GP said is post viral fatigue as we both have joint pains which we did not have before as well as total lethargy.
My consultant had mentioned that broncho thermoplasty to me as an option but nothing ever came of it as they decided to go down the biologicals route instead.
I wish you all the very best and I hope that you will find all the help, advice and support that you need here on this forum .
Good luck with everything 👍👍
Take care & stay well.
Welcome
Dont let the buggers get us down because to coin the cancer motto together we will beet this thing,and to quote the BEETLES [WITH A LITTLE HELP FROM OUR FRIENDS ] and also research
David that's my view. I say it's just a flesh wound, alot
I am only taking hydrocortisone these days as I have stopped making it naturally.
Have you had trouble with bones. I like to fracture bones in in me feet.
Don't get me wrong its terriable but I am not moaning. I have seen some horrible things in hospital. I exspect you all have as well. I am not that bad.
Have you been ventilated? I am scared to death of that. Maybe to the point I wont go to hospital.
Being in trouble has changed my view of the world. I think everyone should see a hospital work. It's a good thing and leaves me humble
Interestingly I’m the opposite. They’ve tried the MABs and are now having vague talks about BT. I have allergic and eosinophilic asthma... the eosin is not controlled with benralizumab but a week or so at my parents with a cat caused me to need hydrocortisone therapy for a few days to fully stabilise. However pre MABs I was like you with regular trips to resus and admissions (kinda still do if you look at my time since Nov tho have avoided resus for over a year now 🎉🎉😅🙈)
I’ve seen and been cleared by physio however am toying with seeing the resp psychologist ( it’s a 3hr+ trip to my specialist hosp hence why I haven’t already said yes)
I think the best thing I did was find this page and others like me. I quite agree that asthma sucks (and blows 😉😂) but generally take the approach that it’s much better to smile and laugh about it than sit in a corner sobbing (to the point one of my nicknames at uni hosp was smiler and they FREAKED on the ward when they saw me on a ‘low’ day due to pred/migraine etc 😅). Hope you are well and find people with shared experiences on here that you can talk too
I have a good relationship with ward. One of the nurses worked a bank shift in A and E she was visibly upset to see what i come in like. We forget they have feelings.
The BT is ok. Don't go into it lightly. I found it pretty brutal as I kept waking up. When you had benralizumab did it drive down your eosinophil count? Mine is down. But I still have issues. If anything worse. I have developed a cough when having a attack. I don't understand why. I sometimes feel they think I am making it all up.
The only thing I miss about the hosp I used at uni is the fact I really knew everyone there 😅. From the pharmacists to HCAs, physios, nurses, admin and docs. I had some really crap experiences there but the staff in general were great and I really got to know them (and the gossip!). I’ve been a lot better since starting MABs (which coincided with graduation and leaving the area), but even in the year that I’ve been where I am now I’ve got to know the team and become known to the 2 resp wards... and a few a&e docs know me well now too tho not to the same degree as I had 18 months of 1-2 weekly trips (at least every other the resus compared to 8 trips in the year to this hosp and no resus - MAB mainly preventing that plus the 45min ambo journey doing B2b and hydro 😅).
BT is something I really want to avoid if I can. My new con at addens (cause i had to move spec hosp too) just sprung on me once ‘you’d be a great candidate for BT if the benra doesn’t fully sort you’.... erm thanks? 🤨😅
Benra and mepo are both anti-eosin MABs... from memory of what i was told benra kills them off and mepo prevents production.
Ugh... bodies! I spent all year trying to tell my new local con I don’t always/usually wheeze, even tho I used to. She didn’t believe me until she saw me with a clear chest but spiro at 51% (my best is 144% and this hosp have witnessed 136% at least) cause every other time I’ve had a mild wheeze apparently. However I think I worked out if it’s solely an allergic attack I don’t wheeze (it only became a phenomena for me once I started anti-eos MABs... minus docs missing silent chest 🙄... cause if you can hear any chest noises through 2 T-shirt’s, and a thick fluff-lined hoodie on a noisy amu whilst you talk to your minions you can strip me naked and call me Doris! 2 hrs later a AN saw me, heard it and got me sorted telling the doc I was to be admitted not discharged 😅). Love how our bodies throw us for a loop and then we either get imposter syndrome or feel like docs don’t believe us! I luckily have really fallen on my feet with both my new hosp cons and I STILL experience this... local con says it’s cause most severe asthmatics have to spend time convincing people there’s an issue cause we don’t get believed and usually get told it’s ‘just’ anxiety so we over justify to docs and constantly worry about not being believed
Please research magnesium deficiency and symptoms of magnesium deficiency also vitamins d3 k2mk7 there are many different combinations of magnesium you need to find the one that works for you . If you get magnesium salts you can put it in your bath water or there are magnesium sprays you can buy or even make your own for a fraction of the cost good luck
Here’s a bit of hope, my mother was told when I was diagnosed with asthma at 18 months old, that bodies change every seven years and I might grow out of it, I’m up for my 11th 7 years this year so fingers crossed again, good luck with your 6th 7 years. Other than that, it’s the same as other disabilities, you get to live with it. I would rather be asthmatic than a lot of other disabilities, even though it’s a bitch at times
I know I have to live with it. I just hope to see my kids grow up and marry. Ideally before my heart starts to fail.
Out the psychologist stuff is interesting. I have come to conclusion I have two brains. The sensible one and the emotional stubborn side. I also have come to realise I used to see illness in general as weakness and I apply this to myself on a emotional level. We working on making better choices. I did call a ambulance when my o2 went to 85 and i could not stop coughing or get control with exercise or nebs. That's a big step I am told. As is talking about it. So i may drone on.
One example
I was at work, in a office block that had another set of offices opposite. These are connected by a heated walk way. So that's the scene set.
My colleges and I needed to get to the opposite block. In no rush. The fastest way was to go outside and not use the walk way. It was about 8c so pretty nippy. One way to set me off hundred percent is to go cold to warm fast. So can you guess what I did? Yes I went outside rather than the tunnel as i did not want my colleges to see me as weak. That's what i mean by two brains. I knew what I should do. I ignored myself and went for the dangerous option. I've done this and other things hundreds of times.
I too have severe and brittle asthma. I'm under the care of Dr. Mansur and Lisa at Birmingham Heartlands they are fantastic. I have had bronical thermoplasty but did not work for me. I've tried many different treatments all have not worked for me yet. Life is a struggle at the moment. I'm not complaining just saying. Just finished a year worth of treatment which has not worked. Waiting for the next treatment to be available to me. I'm sure something will work eventually. Happy to chat if you need too.
I have ended up back in hos. I went out to buy wife birthday gift and it all went horriably wrong. I managed a whole 4 days.
I drove myself to hospital. That was one of those bad calls I seem to be unable to stop doing. My wife came to RESUS I can honestly say I've never been more pleased to see her.
I was doing ok frustrating does not sum it up. But I wont be giving in
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Severe/Brittle Asthma Units
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