Hi first time posting - hoping someone can help! I’m basically after some advice in knowing when to ask for an inhaler.
40 y old female fit and healthy until last September when I got severe pneumonia. One lung was a white out with atelectasis (bits inside the lung dying; they’re still dead) and the other lung just had a small amount. Spent a week in hospital, and then a further 5 months with recurrent chest infections, stopping the pneumonia from resolving. Early Feb the pneumonia disappeared but still very short of breath and chest pain. Referred for spirometry and chest CT and have an outpatients appt for October.
Now we are one month later, I am beginning to feel the pneumonia-fatigue lifting, and I am getting some energy. Pneumonia headache is also fading away. BUT breathlessness is worse. Definitely worse than a month ago; I went for my spirometry tests a couple of days ago and walking from one end of the hospital to the other (which I did when I went in early Feb, left me panting but ok) saw me gasping for breath, very strong chest pain, plus coughing, coughing, coughing. Also a bit lightheaded. I can walk for roughly one minute before I start getting out of breath. It’s much worse if I walk ‘straight’ - I look a little like a question mark when walking; I am very hunched. Around the house I am OK, (and work have allowed me to wfh on short hours whilst I continue to recover) but this is due to being sensible-avoiding the stairs, sitting when cooking, regular breaks with housework etc.
I understand that it is likely I have COPD/asthma/bronchiectasis, and this is what the tests were for. In case it’s relevant, I have never smoked, and grew up in a non-smoking household. So I have nothing to change in my own environment which will help with the breathlessness.
I am not after an armchair diagnosis. I am however wondering if people in a similar situation found that an inhaler helped? I keep reading about exercise helping the lungs, and with the above conditions, but I avoid leaving the house as the breathlessness is so bad. I dont cough a lot anymore. It’s only on exertion, talking a lot and laughing. However I’m now wondering if an inhaler would help with this, and whether I should ask for this whilst I’m waiting for results to come in. I still have another couple of weeks before the CT results come in, so there’s no point trying to get the results before then, even if they will give them to me outside of my outpatients appointment.
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SirCoughalot
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I presume you are still under the hospital, so what I would suggest is see your GP, explain everything and ask if an inhaler would help. The doctor should be able to look at your results and decide. I personally think an inhaler would help.You could also ask about pulmonary rehabilitation which could benefit you.
Thank you - I have spoken to the GP but they just focussed on the pain and prescribed something for that. I will speak to them though. They won’t get sent the results - I asked already; they only get sent to my consultant 🙄
Welcome to the forum SirCoughalot and I really hope you can find something to help. A visit to your GP is a good idea and I agree with jillygirl, an inhaler could be helpful. Xx
The result of the ct is most important. If you have bronchiectasis it can only be diagnosed by ct. Bronchiectasis and Copd are treated differently. If you have bronch it is essential that you get yourself a bronch specialist. GPs know nothing about it and general respiratory consultants very little more. Find a name at a big teaching hospital and insist on a referral.With bronchiectasis the main problem is infections where bacteria in the mucus trapped in the airways or damaged lung tissue keep having a party. An exacerbation can wipe out your energy and make you breathless. This is usually treated with antibiotics. Some people with bronch find an inhaler useful. I have had bronch for 73 years. I have an inhaler which I use twice each day. It does not have the relieving affect on me that inhalers seem to have on my friends on here with copd but the small amount of steroid in it does help control inflammation in the airways. You need your results much earlier than october as you should not be going on having infections as each one leads to more lung damage. If you have copd your GP will have more expertise in that as they get more training in it and they should be able to give you the inhalers that you might need.
Hopefully your GP will get the results. Meanwhile start looking for a bronchiectasis specialist just in case.
It is going to take you a long time to get better from the pneumonia so be kind yo yourself.
Thank you Hidden that’s a really interesting perspective. Sorry to hear you have had bronch for so long but hopefully you are well. The spirometry nurse did say I might find my appt is brought forward when the results came in (it was obvious I wasn’t doing well on the tests) but like most PCTs, ours is really struggling so I am not so sure. It’s really tricky to find the balance between being patient and just waiting, and then thinking hang on, x y z is worse! At the moment I am waking every night, very out of breath which is frustrating, as obviously I need my sleep. And a bit bizarre. I’m not exerting myself! Literally just lying there…
Maybe ask to get your heart tested whilst you are waiting. 12 yrs ago I became a lot more breathless than usual. It took me 2 years to persuade them all that it was not bronch. I had developed AF and dilated cardiomyopathy. Having bronch all of my life has just been something that I lived with. I have run a business had children and travelled all over the world. With bronch it is the management of it, both personal with lung clearance and exercise and with antibiotic treatment, oral, IV or nebulised. You will feel better when you are recovered from your pneumonia and know which condition you have so that you can manage it.
Hello SirCoughalot, all the replies so far seem spot-on and do try to make sure you get a) to see your GP and b) referred to someone who knows about bronch as well as COPD, they're actually rather different conditions. Your GP should certainly get sent your CT results by your consultant, and pass them on to you (or you can ask your consultant's team direct). I have CT-ILD, quite a manageable case till recently when I had pneumonia for the first time, and reading up about it I realised it takes much longer to recover properly than just getting free of the original infection/inflammation. Meanwhile you should do everything you can to avoid more bacterial infections - get rid of all the mucus you can (are you taking carbocisteine to loosen it? Ask for it if not), don't be tempted to use OTC meds to suppress your cough as it's helping you to do that, etc etc. Make sure you have a 'rescue pack' of ABX from your GP or respiratory team for immediate use if you feel another infection getting a hold, if your mucus looks nastier etc. It strikes me that you shouldn't be getting so breathless without any exertion (unless you have very active dreams!?); my inhaler certainly helps me when I am (breathless), so do try for one and don't be afraid to ask to change it if it isn't helping - some are steroidal, some not, aimed at different conditions etc. But also, have you tried sleeping with more pillow support? At the peak of my pneumonia I could only sleep at all when virtually sitting up, and you might find that helps until things have really cleared. I've been referred for pulmonary rehab, not started yet but I've only heard good things about it, so do make sure you get onto that when you're well enough. And best of luck! It's a lousy break but as you've heard many live full lives with damaged lungs, and everyone on here will do whatever they can to help and advise.
I'd n9t hunch up when walking,u need gd posture to get benefit of full lung space. You may benefit from looking on aluk website - read up on controlled breathing - pursed lips technique.its very useful whn active,walking or breathless. Relax + practise,practise, practise so Yr comfy using it whn u need to. Whn u walk,slow down to a pace where u do that technique, and avoid the coughing.I take supplements to maximise immunity.
Do avoid people with viruses,even colds & keep handgel with u for same reason- touch door handles,bannister,shopping trolley- clean hands as Yr v susceptible to infections at mo.
Give yrself time to recover. Work on these basics as they'll help u.
Thank you. Yes you’re right. I’m worried about developing back problems too. I tried to straighten up today picking my son up from a club, and that’s when I realised just how hunched I’d become. I will look up the breathing techniques now.
Another gd breathing exercise,whn sat relaxed, is to take a slow deep breath in to expand the lungs, holdc for cpl seconds, again breathe out as slowly as u can,thro pursed lips.even 3or4 times,slowly,couple of times a day does help ( i think of this as lung stretches)xxx
Pneumonia absolutely knocks you for six. I've had it 5 times and each time took at least 3 months to recover from and I imagine much harder if you have a family. Mine had flown the nest. I've not had pneumonia since the vaccination which lasts many years - do ask for it, it would prevent further bouts. Avoid anyone with colds, which could very easily progress to chest infections whilst your immunity is very low. Take a super tonic, vits & minerals to rebuild.
It's very difficult for us to say an inhaler would help....( my personal opinion having experienced breathlessness with asthma is that it could however, I'm not a medic & there are rules on here). I think the majority of members will be using inhalers so it's difficult to comprehend how any of us would cope with our various conditions without them.
There are so many lung diseases and some people have more than one or two to cope with. I do hope the results of you CT scan come through sooner for a diagnosis, I know how frustratingit is not knowing whilst suffering.
Spirometry is good for diagnosing copd, some can aquire it through chronic pollution or working environment and some have it due to a genetic deficiency called Alpha-1 Deficiency (then there are different types within it). A simple blood test gives the answer if you request it (I'd insist on it).
I do suggest you ring the helpline on Monday &/or WhatsApp them a copy of your post , phone number is 0300 222 5800 UK office hours, you'll be able to speak to a professional for guidance on how to get help now.
I use 'Pursed Lip Breathing' duringlike pilates or walking uphill & airways close (asthma) and 'Deep Diaphragm Breathing' is very useful for calming breathing/anxiety/ stress .... demonstrations for both on YouTube.
Thank you - yes definitely planning on asking for the pneumonia vaccine next year and the children have all been warned that their flu vaccines are non-negotiable (they have them at school and the odd one has ducked last minute). Actually the children keep me going; would be terribly easy to just dive under the covers otherwise BUT they are harbingers of bugs. My eldest warned me she has started to cough today; like clockwork I have felt a sore throat and sniffly nose this evening as yet another cold hits. Just have to hope it doesn’t go to my chest .
I actually didn’t know about the helpline - I need to look around this site a bit more clearly! I will definitely give them a call on Monday so thank you. Have been trying the pursed lip breathing someone mentioned up thread but I found it very hard work! My son plays a brass instrument though so perhaps we can do it together which could be a motivator. My FIL has severe breathlessness and whistles every third breath. I wonder now if he is doing the pursed lip method. I shall have to ask him when I see him next.
If u struggle with pursed lips, do the breathing exercises anyway,once you've mastered it,work on pursed lips as it helps control the breath out - its like soft kissing lips or soft pout x
Hi and welcome, sorry to hear about your situation/problem . It does sound like you not only want but need an inhaler. I got an inhaler a year after diagnosis and the GP apologised and said I fell through the cracks as they gave me a COPD review and realised their mistake when I didn’t have an inhaler for the spirometry now have both preventer and reliever inhalers. You have to be insistent with the gp(firm but fair). Also talk to your local pharmacy they can be a great help, it’s a lot easier to talk to a pharmacist and quicker and they can relay your situation to your gp. On your results as they are computerised your gp can access them when ready you (sorry to say) have to keep on at them. On exercise/ rehab there are lots sites online to help look for breathwork and pulmonary exercises that you can do indoors and seated there are videos to help as well. Good luck just remember it’s your body and you know what’s what just be firm and fair and get the answers you need. Kevin
it sounds like Pulmonary rehab course would be very useful for you SirCoughalot - 12 weeks of attending with the staff there taking you through the exercise programme and checking your BP and sats every week. That would help build you up and help with posture issues. I found it very good. But most likely a waiting list so as others have mentioned see what is available on line too. Sounds like you need to see the GP re inhaler question and they have to refer you for the rehab course. All the best
I am so sorry for everything you have been through. I am also recovering from a really bad bout of pneumonia. Also previously fit and well (44yr old female) and this has just absolutely knocked me for six. I am stuck upstairs in bed almost the whole time as I still can't manage the stairs without extreme exhaustion the next day. Thankfully my mum has moved in to look after me and the kids as I wouldn't be able to manage anything. I am using an inhaler every now and again when I'm really breathless. The GP said it probably wouldn't help much but wouldn't do any harm. I find that it does help a little sometimes, and the act of having to take a deep breath whilst using it, and then holding the breath, helps to calm and regulate my breathing more than anything else I imagine!Also a few people on here recommended ColdZyme (use at the first sign of a cold to stop it going any further) and NasalGuard Cold & Flu block (protective barrier) for when you are out and about (or even just when your kids are home from school).
I really hope you recover fully eventually and get all the help and treatment you need. X
Oh gosh you are suffering. Sounds like you have good GP care which is something. It is so difficult with children. Mine kept me going but also, on reflection, definitely slowed my recovery. I wouldn’t do anything differently (apart from get a cleaner-we couldn’t afford it, but looking back, it was worth getting into debt over); it’s just such a difficult time of life to get ill. Mine was just after my 40th birthday so had all the ‘life begins at 40’ cards round the house, mocking me!
I was also in bed for a few months after coming out of hospital. It is really grim; I hope you are OK mentally as it is such a debilitating time. We put the kids on school meals so they had something decent and had a non-rent paying lodger at the time who was happy to put together an OK evening meal, and being a ‘safe’ person (I was no good in an emergency), and then friends who helped out with the school and clubs run. We did have quite a few offers of play dates, but they were just spending the time on screens so I kept the kids at home. (My friends are lovely, no judgement on them). They still had too much time on screens at home but at least they also had some time without. Without the lodger my husband would have had to stop work (he works very long hours, and took on extra work at the weekends to bridge the gap left by my reduced earning) which would have meant selling the house, so we were so thankful that this bit of fortune was smiling on us. So completely hear you on needing your mum. It is so great that she can be there for you. Probably great for the kids to have a bit of grandma time too 😍
In case this is helpful (not sure how long you’ve been recovering), a couple of things I found that helped:
- bed table. Cost around £10 from Amazon, useful for playing cards as well as meals. I had really trouble with my right side and so was really great not having to reach for the bedside table
- cheap kettle in the bedroom and daily milk brought up. At first I couldn’t manage to get out of bed to make it myself but it meant my 10 year old could come in from school and make me a cup, without the danger of it splashing on the stairs. Keeping a packet of biscuits meant that I could have lovely chats with the boys when they came in from school. I know you have your mum, but having the kids help me a bit was nice for them, and gave them valuable understanding for the ongoing recovery, as you’re able to be downstairs, but still do very little.
- Travel sized Azul. This is a tile board game which is suitable for any age. Minimal movement and concentration. Can be played in bed, on afore mentioned bed table; you have a small board which you can hold in your hand and then a central ‘pot’ for the bed table from which you select tiles. Short game so you can rest afterwards. We actually got it when I was further on in the recovery but wish I’d had it sooner!
- Netflix on phone. Put on long running series so you can nap during and not lose too much from the plot. Having it on my phone was easier than tv as I’d usually drop it if I fell asleep so it wasn’t blaring at me
- Bedside table full of painkillers
- Several bottles of 1.5 water, with a goal of finishing a bottle a day
Take care, and remember that the road is slow once you’re out of bed, but it will eventually get easier. A couple of months into recovery, when I was well enough to be downstairs, but not much longer else, my husband had a week off work with pleurisy. He doesn’t get paid sick leave so was genuinely really ill, but in comparison to me, I felt he was like a spring chicken! I remember begging him to go back to work as I couldn’t handle that much interaction - he was only talking to me! But rest was/is so important. Even having ‘nice’ lunch with him was exhausting. I just wanted soup in a flask and peace!!!
Take care and thank you for the prevention tips. I will definitely get some in xx
Thank you so much for all the tips and ideas - kettle in room is a brilliant one and I’ll definitely get that game! I got a bed table already which I’m loving! I completely agree about too much social interaction being exhausting - even if I’m not doing any talking!
Yes I’ve taken the opportunity to give the kids lots more chores and it’s definitely good for them!!
I really hope you get well soon. Take care and look after yourself xx
And I’m sorry you got poorly so soon after your 40th - which can be a tricky birthday at the best of times! I keep thinking that in the grand scheme of a lifetime these long and difficult months will be but a blip. Have you read Wintering by Katherine May? - I highly recommend!
And also (sorry to keep talking!) I just wanted to say how helpful it’s been hearing of your own experience (although I’m so sorry for you that it is your experience). Most googling about pneumonia makes it sound like it’s fairly straightforward and “you should be back to normal” within 2 or 3 months. This is clearly not the case for either of us. And I sometimes feel like I’m doing something wrong by not getting out and taking short walks to build up my strength!
And to keep replying 😂 - I found if you google severe pneumonia it will bring up the ‘right’ responses. I saw a GP at around 2-3 months who was incredibly clear with me; she said with every illness they say try and do things as soon as you can EXCEPT pneumonia. She said if I pushed it, I would be on antibiotics again within a day. It was hard, but really good to hear. Do rest
Do very gentle seated exercise. Your muscles won't thank you for short walks, especially if there are nasty sharp winds blowing. Just circling your ankles or raising your lower legs to knee level helps.
Welcome to the forum. You've had lots of good advice here. I can only agree with all of it. An inhaler sounds a good idea and do ask to be referred for pulmonary rehab. Definitely, you cannot wait till October.
Yes I will definitely ask to go on the rehab waiting list. Really great advice on here. It’s about knowing what’s out there to know what to ask for I think. Also interesting with the pharmacist suggestion. My pharmacist has been really caring; he’s the one constant (as I often see a different GP), and now knows me and my husband, and asks about me and my recovery when hubby grabs the latest script. Didn’t think to ask for help from him but he may be ideal.
I believe that maybe my bout of Pneumonia and Pleurisy I had in Nov 2019, may have been the cause of my Heart Failure, which I now have. Although I have COPD and Bronchiectasis, it is the HF which makes me puffed out: even just getting into bed, makes me puff and pant for a few minutes. Worth getting it checked.
Welcome to the coughalotclub! Unfortunately recovery is always much slower than falling ill. Don't despair, you will get over it, but it may take many months (I am still improving every month from a series of exacerbations in 2019). Hopefully you will find a doctor who is open to changes with medication, antibiotics, corticosteroids, inhalers, oral, nebuliser whatever combination or dosage works for you to bring down the inflammation.
i’m surprised a doctor hasn’t prescribed an inhaler for you. An inhaler really helped me except I’m going to have to switch from albuterol to another one. Because albuterol makes me lightheaded and dizzy, and fatigued. but at least I can breathe again and have more energy.
I spoke to the consultants secretary and requested that they send the test results to my GP so that he could make an informed decision about an inhaler.
Just spoken to him and he said that whilst it’s not really for him to interpret the results, he could see that it’s nothing obstructive, so an inhaler is not help. Bad news is there is nothing he can suggest to help; he did say maybe it would improve??? But also that he would write to consultant and ask if the appt could be brought forward.
I had worried that I have pulmonary fibrosis, as my armchair dissection of spirometry result (which I saw on the NHS app) kept coming up with that as a result, but GP says CT shows no lesions, no fibrosis and no chronic changes, just scarring of the middle lobe. I was already aware that I have chronic atelectasis in the base so I’m not thrilled the scarring is in a different area! And I of course don’t really know what consequences (if any) that scarring will have on my day to day living. Long wait til October to find out I guess.
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