Severe SOB

[wildblueboy]

Hi all,

This is my first post. I have been reading a lot on here over the past 48 hours and can see a caring and helpful community.

I am currently suffering with really severe SOB I can't breathe out. This is my 3rd attack in 6 months.

I have had asthma since birth and been on reliever and preventer inhalers since 5. Currently on Symbicort 200 SMART therapy up-to 12 puffs a day.

I smoked from age 16-30 and have been stopped for 24 years.

I have lived with varying degrees of damp and mould at home for over 30 years and repeated black mould outbreaks at work for 10.

Chest xrays and lung function in 2020 were OK.

I had a 7 day course of oral steroids last summer when the heat caused the cellar to smell badly. The tablets didn't work as quickly as they used to.

I have no phlegm or cough and no wheeze on my chest.

I had a respiratory appointment in hospital 2 weeks ago after a 6 month wait.

I was seen by the same consultant who wouldn't believe that my asthma attack in 2017 could have been caused by mould.

Then I needed 3 courses of Predisilone to get my asthma under control after breathing in black mould at work and was off for 7 weeks. I struggled to walk to the end of the road at my worst!

I explained that I had had long term exposure to damp and mould at home.

He said it was due to nerves. I know thats not true. My mental health is good despite everything.

This time, he said I do definitely have inflammation in my lungs after breathing into a machine.

He has asked me to keep a peak flow diary for 3 weeks. It is consistently 600/650 before and after taking Symbicort. Is that normal?

However, despite the peak flow reading the Symbicort inhaler isn't working or relieving the SOB. I'm really confused!

If I bend to tie shoelaces I cant breathe at all.

I am going to call the hospital tomorrow to try and get the phone call with the consultant brought forward.

In the meantime I am stuck not able to breathe out. I am doing triangular breathing and pursed lip breathing and trying to manage with jigsaws, crosswords and mindfulness techniques.

I am looking to try and get a house transfer to get away from the cellars but progress is slow.

I got the council to finally tank them 3 years ago and was moved out for the work to be done.

I fought with work to install a dehum and to repair the ventilation system in the basement to improve the airflow and try to minimise the risk of more mould and mildew. I work full time and am looking to try and get a transfer to a shop without a basement.

I was hoping someone might be able to give me some advice.

I have a 5 day course of oral steroids in the drawer. Would you recommend I start them today. I am due back at work on Wednesday or should I see a Dr first.

The last time I took them it was 7day course and they didn't work as well as normal in getting my breathing under control. It was probably 12 days before my breathing returned settled.

I'm being told by people that I have COPD.

It feels like there is something in my lungs that I just cant get out. Is that a sensation you recognise?

Also, would going to casualty help. The last time I was there in 2020 the Ventolin nebuliser they gave me didn't work very well I was in with flu.

Is there anything they could do to help me now?

Sorry for the long post! When I spoke to the nurse at ALUk she said to ask for Spireva but the doctors wouldn't prescribe it without being seen by the respiratory team at the hospital.

Up until last week my breathing improved when out of the flat but now it's bad everywhere!

I've been reading posts on air filters. Do you think one would help. I sleep directly over the cellars.

Any insight or advice would be great. I run a dehum at home to get rid of the smell of washing which really helps.

Thanks for reading x

[Troilus]

Hi wildblueboy.

When you are so short of breath with asthma and you feel your inhaler isn’t working I’m fairly certain this is not the time to self medicate and cross your fingers. If it was me I would be calling 999. If you don’t feel comfortable with that then ring 111 and let them make the decision for you.

[wildblueboy in reply to Troilus]

Hi Troilus, Thanks for replying. I have booked a call with 111. I've never had Symbicort not work at all before.

[Alberta56]

I can't really give advice on your condition, but it sounds absolutely dreadful and needs to be brought under control. It seems to me that you need to see a different consultant, one who will test you for COPD and any other possible lung conditions. A lady called LutonTown has posted some very telling posts about the effects of mould on health, and how getting rid of the mould resulted in a miraculous improvement. Take a look at her posts. I hope some more knowledgeable people will be along soon. You need evidence to convince your Council to move you out of this unhealthy flat.

[Bingo88]

Good morning wildblueboy. I do understand its a very difficult situation but I think you should be getting onto your local council about the living conditions you are living in and also working in as well. I would have thought until these are sorted out you will be on a vicious circle of trying to cope with your health conditions. I know we all need a job and somewhere to live. But our health and wellbeing is the most important and to employers we are just a number the majority don't care as long as the job is done. Hope you get some help quickly and take care and keep in touch. Brian

[Loopylorre]

Hi, can only reiterate what others have already stated to you, I wish you luck with getting something done regarding the damp & mould issue, definitely contact someone regarding your breathing, please keep in touch & let us know how you get on when you’ve had your call back from 111 😊 xx

[wildblueboy]

Thanks so much all of you!

I did speak to 111 last night who arranged an appointment with the Dr this morning.

She has asked me to take the oral steroids and issued a ventolin and will chase my respiratory appointment and call in 3 days to see how I am. I was reassure that I am definitely not imagining this.

She diagnosed chronic asthma brought on by environmental triggers. However, agrees I should have further tests at hospital.

Having it all logged on record is sensible so am glad I went.

I have contacted my Housing Office re a transfer on health grounds and will get on to the repairs team again re the drain and damp.

I will check Luton's message and start navigating and learning my way round the site to avoid repeat posts.

I wish you all a good day and thanks for your support it meant a lot last night.

Best E

[Patk1 in reply to wildblueboy]

Sounds a produuctive appointment.ventolin( salbutamol) is a reliever, ease symptoms and is a very good bronchodilater .Yr lungs have certainly been challenged with mould & environmental issues.id get a supporting letter frm Yr gp for council - would a bungalow be better? - no cellar or other peoples odours.letter too for employer re " reasonable adjustments" - perhaps improved airflow via ventilation eg extracter fan & air purifier?I use air purifiers at home,just cheapies frm ebay.they help me & I have 1 in bedroom and one in lounge.they absorb allsorts.

I hope steroids+ventolin quickly help u . Have u had a ct scan x

[katieoxo60]

Hi wildblueboy , as this post only came up today, I am hoping you will have called help and be presently looked after. But just a few points incase , one a small hand fan is very good to reduce the feeling of not being able to breath, it is possible you have Asthma / COPD which is often worse than one or the other. Obviously no matter what it is,it is not under control. Many GPs do not deal with breathing problems other than what the hospital suggests. The 600/650 peak flow sounds good to me . Mine is never over 300 with or without inhalers. As I understood it if its below 250 you need hospital admission. Mould is not doing you any good either that can be worse than smoking. Have you tried using a humidifier to reduce the mould, or damp paint on the bad areas to reduce the mould and condensation, DRying clothes indoors produces condensation which is similar to damp and the paint reduces condensation as does ventilation and regular low level heat. Your employer should be working on your employment environment to ensure there is no mould or airpollutants even if only providing masks. Masks are another way at home to reduce the mould from going in your lungs. Of course you know its no good trying to make it better if your home enviroment is causing the flares, so moving would be better how ever easier said than done. These are all meerly suggestions , social services might be able to do an OT of your health and give some helpful ideas. I find Herbal teas and colder drinks help, plus boiled sweets but still need inhalers to clear the lung. You have my best wishes and hope in the coming months you recover and can move on to better conditions before its too late including better work conditions or maybe a new work place.

[watergazer]

Hi there. Have you had blood tests to check out if mould is affecting you. I had them done plus lots of others blood checks when I went to see a consultant. Checking all bases she said.

If you are really struggling to breathe go the A&E take care x

[Gymnastics2]

Hi I had a few leaks in my bedroom one from flat above every time they used their shower water ran down the walls of my bedroom then with constant rain it was coming into my windows destroying wall paper and window ledge it's a old building no double glazing sent pictures of how bad it was to landlord he eventually fixed things I bought a diumidifier and a air purifier have diumidifier running during the day and window slightly open.and air purifier next to my bed it's pretty quiet so on all night bought it on Amazon find it really helps my breathing

[Menomommy]

have you considered xolair. I’m on it and no more asthma symptoms

[wildblueboy]

Thanks everyone, : )

I have an air filter now beside the bed which is helping. The oral steroids have yet to kick in but I am using the ventolin and though had to move slowly I was able to get to my PIP meeting today which was good - the form should be in on time now.

I have been on home swapper again to see about getting a mutual exchange as the council are so slow in doing the repairs. I'm also trying to work out if I can afford to rent a room on top of the flat (hmmm) to get me out of here until my housing gets resolved.

I am waiting on the consultant giving me a definitive diagnosis if thats possible, as it might be that I could then stop working for a while until my symptoms are better managed and also look for another job hopefully with reduced hours.

My Doctor was sympathetic today but again said she couldn't prescribe any extra inhalers without the consultants approval and could only recommend a nebuliser at A+E if my symptoms get worse.

Hopefully I can avoid that. I will try the tips above. I try to do washing in the morning if possible so I am out at work whilst its drying and use the dehum when I get home. I also use an extractor in the kitchen as charring and cooking smells can make my asthma worse.

It's so nice to talk to people who understand. I feel like I burden the same friends who have their own worries and different health concerns.

Thanks again, I really appreciate it

Have a relaxing evening, E

[music in reply to wildblueboy]

Hi wildblueboy i was diagnosed with mild COPD 11 years ago and was on ventolin inhaler for some years that did work for me with my breathing and wheezing, but 3 years ago after my yearly spirometry breathing test the nurse thought that i might have asthma because i have stayed at the mild stage for so long and tried me on a new powder inhaler RELVAR ELLIPTA 92/22 once a day and that was 3 years ago and since taking this new inhaler i have not had to use my ventolin once also i have no breathing wheezing problems at all But the nurse said they could not give to me before because they thought i had copd and this inhaler now is for asthma only

Best wishes

music