Another admission

[1974lovejoy]

Morning .. just been discharged following a third long admission in 6 mths. Bronchiol Reactivity has been mentioned . I am reacting to particles in the environment particularly fragranced candles and cleaning fluids ... I feel I'm living in a bubble constantly sniffing any new environment ( public areas are the worse) When I get a reaction I end up in hospital on 5 days of nebs followed by a long recovery time ... I react quickly to triggers and slowly deteriorate over the following days before picking back up . ( think this is the difference between occupational asthma and bronchiol Reactivity) initially nebs are back to back and I gradually wean. I'm exhausted ... I have a good team of drs and I'm in the system and waiting for a challenge test ( not looking forward to this as it'll make me unwell they say but it'll be controlled environment and I'll be prepared ) my question is have anyone heard of or suffer with Bronchiol Reactivity? Think it can be helped with Meds... long term steroids have been mentioned ? But till diagnosis they can't change much meds ... I have had an inhaler change this time from DuoResp to Fostair .... hoping it will help a little ! Any advice is gratefully received ....

have a good day .. x

[Beth_19]

I've not heard of it but it sound similar to how I react.

I can react to triggers seemingly within seconds and seem to be a lot more sensitive to smells. For example at work I can get whiff of something (usually perfumes or aftershaves of someone new in the office) and I find myself suddenly getting wheezy, tight chested (as if literally my lungs have been clamped down) and coughing but nobody else smells it until a couple of minutes later. I have to go into another area away from it use my inhaler and breathing techniques to get it back under control to the point where I can function even at a low level but the symptoms can linger for hours sometimes the rest of the day.

[1974lovejoy in reply to Beth_19]

Really interesting how you mention smell ... I've always had an extremely strong sense of smell but in the last 6 months it's of the scale .... I've been having physio for 6 mths on the Buteyko breathing programme .. really good at keeping my breathing in check but when I have a trigger it's impossible ... especially as each time I'm hospitalised .... I can cope with one trigger but a second within a week will hospitalise me !

Thank you for replying x

[Jandm]

Hi 1974love joy

I have a hyperactive airway. Perfumes, some candles, bleach, paint, air freshener and the list goes on! Like yourself, I can be exposed to a trigger and over a course of time it gradually deteriorates until I can only walk a couple of yards, lose my voice and I am literally gasping for every breath. I have tracheobronchomalacia, bronchiectasis and asthma! I constantly feel like a canary in a mineshaft because one breath can result in a downward spiral necessitating steroids and antibiotics on top of my regular medication. More coughing will inevitably cause further damage to my trachea and bronchus. I mentioned low dose steroids but that was rejected by my doctors. I would love to know how this can be more controlled. I'm presently living in a bubble also, so you are not alone!

[1974lovejoy in reply to Jandm]

I also loose my voice .. trying to talk makes me feel I'm drowning ... dreadful air hunger ... it's how long it takes to pick up after a deterioration... its day 6 today and still trying to get my peak flows above 350 pre inhaler (. Norm is 550-600)... puts inhaler its 450-490... do def improvement. Consultants are trying to rule asthma out but with the PF changes this time they are also thinking an element of asthma is present. Each dr I see says the same .. not asthma because no wheeze and voice lose present... not asthma I don't really desaturate.. very frustrating as I don't care if it's asthma or not but would like to get out of the bubble before I loose my job! Although asthma seems the easy option at the moment ! (. Tongue in check ) Highly likely I won't be able to return to my normal role as too many environmental issues ... I'm a paramedic ! So office it is with the ability to avoid the loos when the cleaners about and the smoking corner as I walk to get my lunch !

Thank you for replying ... nice to know I'm not alone ... !

[Jandm in reply to 1974lovejoy]

I've spent years in the same condition. No voice, no breath, steroids, antibiotics....the list goes on! It's taken years to get a difinitive diagnosis as I can sail through peak flows, spirometry etc. My trachea is hypersensitive (I've also mentioned it at least a thousand times). My central airway has collapsed significantly probably due to chronic irritation. A common cold virus is totally debilitating as it is with different irritants. You need a good consultant, one who thinks outside of the textbook. Each relapse takes longer to get back to a normal baseline. Don't rush yourself, I've found out the hard way that it doesn't help and work don't appreciate it. Be kind to what your going through and listen very carefully to what your body is telling you.