Has anyone been told they have bronchiectasis when it was asthma?

[wiserlady]

or vice versa ? what happened? how did it turn out?

[Patsy164]

I had asthma first but was diagnosed with bronchiectasis much later more than 20 years later. I have better medication and treatment now, was diagnosed in 2017 but it is more manageable now. It took a hospital stay to get where i am with it now. Do you have both?

[wiserlady in reply to Patsy164]

Hi there, I was taken into hospital about 20 times with supposed asthma, had lots of inhalers thrown at me each time, only to be there again a week to three weeks later. Nobody ever listened when I said the inhalers did not work or made it worse. Then I was told I had bronchietisis, and told I had to put up with it and use inhalers, and now it turns out I have GERD which causes very much the symptoms I was struggling with all along.

[Patsy164 in reply to wiserlady]

I have gerd as well. Have you had a ct scan to diagnose bronchiectasis.

[wiserlady in reply to Patsy164]

Hi Patsy, I wont bore you with a long history of it, you will fall asleep. But at one stage I was back and forth being taken in into hospital in an ambulance for a week each time being put on antibiotics and steroids, never getting to problem, and never listening when I say they dont work. I stopped going to see the consultants as they were 20 miles away and I was being expected to keep going back and forth to different people who would cover the same ground as the last person before them, making wild guessed as to what was wrong with me and not listening to me, and each time having to take time off of work unpaid with my business and finances becoming dangerously low. I can get inhalers off my doctor with just a phone call, yet they wantedme to go back and forth waiting six months for an inhaler and then six months later change it to a different one. I can do all that on phone with doctor all in one day.

And none of them helped. In May I went on monkelust and for a while felt terrific, masses of energy, feeling very positive, no breathing problems etc, best I had felt for many years. But then bit by bit that went, with a raspiness in throat, cough, stomach unbearable, back ache and much more.

[Patsy164]

That sounds horrific so they haven’t really given you a firm diagnosis other than asthma and gerd? I started off like that it took two years of back and forth to local hospital and I had pneumonia had a second ct scan this time thorax and was diagnosed. I don’t feel well most of the time and only have a couple of months rest of it all. It can be annoying but I am retired now so have no worry about getting up for work. I had to retire as I was ill so much. Still 62 isn’t a bad age to retire.

[wiserlady in reply to Patsy164]

i hope you feel a lot better soon Patsy, and that you get more of the good days. What exactly is wrong with you at the moment and what medication and things do you do? I am 63. I get very annoyed when they talk as if it is ok to keep going back and forth and you wont have a life or income to pay the bills, you have a cheek to mention it. I remember one time we went to the hospital for me and saw the consultant and he said he wanted a blood sample and for me to go back the day after to do it. The hospital was 20 miles away, I dont drive, my guy has to take a day off of work unpaid to take me, so he would have had to rearrange all of his work at the last minute and lose another days pay to take me back there the day after. I insisted they do the blood test while we were there and made a fuss.

[wiserlady in reply to Patsy164]

I agree that 62 isnt a bad age to retire but you might have been very upset about it, really missing your job, or needing the money.

[Glynshem]

Hi, I have found diagnosis is really haphazard. I was very bad with it about 10 years ago and my GP kept saying it was asthma! Eventually, through the company I was working for I went private and they diagnosed bronchiectasis. Since then I have had awful experiences with my doctors. They treated it as bronchiectasis for a year or two but as GPs left they went back to treating it as asthma! I was getting worse a few years ago and basically insisted that they referred me back to the hospital. After one appointment they said it was asthma and not bronchiectasis...... The asthma nurse at my surgery went mad when I told her and said to insist on getting referred back for a second opinion and she printed out all the test results I'd had privately to prove it was bronchiectasis. This is where it gets really weird, she said she would remove me from being an asthma patient as that was a waste of time...... This was pre covid. Fast forward to last week. I rang my GP as I have been having a few breathing issues and my GP, another new one told be that I am not listed as having asthma or bronchiectasis so it was probably a bad cold!

After 10 minutes on the phone insisting I have one or the other she told me if it's not better in a fortnight to call back. She also said that she was taking me off trelegy as I don't need it.....

Totally bizarre and I mention it only to show how hard it seems to be to get a proper diagnosis.

[wiserlady in reply to Glynshem]

I have had much the same sort of thing going over years. you have to do a lot of research and be firm and put your foot down and not just believe what they say.

I remember one time I was in hospital with breathing problems and the nurse said I would be going home soon but they could not tell me the date - but they wanted me to say to my husband that it would be soon - as if he must stop working - and cancel all of his business appointments for weeks - so that when they say that is the day he is immediately ready to rush over. If we had been stupid enough to do this he would have lost two weeks income for nothing. income we needed. he also would havev lost those clients and contracts so it would have badly affected our future. bit by bit woudl have gone bankrupt. I pointed out that he works, he has business apointments that are arranged weeks before and cannot be cancelled or rearranged at the last minute. They got all huffy with this notion that only your health matters, none of that matters. As it was he was strugglign to keep his business going and earn an income - but none of that mattered. They talked as if we were greedy for money if he thought it vital to make sure he did not cancel days for no reason and lose needed income. What had not occurred to any of them was that as it was to pick me up to take me home it made more sense for me to get a taxi home than for him to take a day off of work unpaid anyway.

I can also remember times when I struggled to breath and they were quick to say they would take me away in an ambulance to the a & e hospital a long way away - to end up on a nebuliser for a bit and then sent home. this would mean me losing a whole day to sitting around and then having to pay a fortune for a taxi to return. I tell them I have my own nebuliser at home - which is the same as the one in the hospital - if I need one it makes far more sense for me to stay here and use mine, but they try to insist, all totally pointlessly and all the inconvenience and expense and time would be for me.

I would have thought that the fact that the asthma inhalers dont help me is a big clue to it not being asthma, - even when ive chopped and changed and tried them all. Yet lots of times I have said this to a doctor and I get "WELL HERE IS A DIFFERENT ONE TRY THIS ONE! " and its always one I tried before. Now I take a list of the inhalers with me and refuse to accept any on the list. This really stumps them as they are all on the list and I tried them all. To me it looks as though they want to be able to say well it is asthma because it makes their life easier, less work, less time, than listening and thinking again and doing more work.

I now refuse to go for spiro tests, it is a long way away, my partner has to take a whole day off work unpaid, plus losing future work and customers. And they just do the same thing over and over again, it does not achieve a thing.

Are you in the Uk?

[Glynshem in reply to wiserlady]

Oh dear, sounds like you have really been through it. It's such a shame.

Hope things are better now.

Yes, I'm in England.

take care

[wiserlady in reply to Glynshem]

I asked if you are in the UK because you said you had been for private help with this. It must have been expensive. Are you glad you did it?

One thing I find helps is acupuncture. It is not expensive compared to many other things and no side effects.

[Sops]

Had vice verse for years, on inhalers of all colours, contracted pneumonia and was given a cat scan, results disturbing huge airways and lungs with bags of mucus. Still use Salbutamol, , seems to help me breath. Now have severe Bronch. So clinicayy extre,e.

Sopsx

[wiserlady in reply to Sops]

Am sorry to hear that and hope you feel better now. Was a long boring thing and similar with myself. I find the best thing is to think for yourself, dont just accept what doctors tell you as if they can do no wrong and never make mistakes. Often they are just guessing and you are better off staying at home and googling than waiting months to talk to them and travelling for the privilege of another guess.

[Sops]

I was asked by my GP to-attend a session with the new practice pharmacist who was conducting a trial into meds and asthmatics.i told her i did not have asthma and she said would i talk to him about my symptoms. Well I did and was prescribed a med for ‘ my condition.’ I collected it with misgivings and did not take any.

A few days later was my 6 month meeting with my respiratory consultant, he was accompanied by a registrar shadowing to train as a respiratory specialist. I said i had been given a new med and took the box out of my bag. My consultant virtually leapt across his desk and grabbed the box asking if i had taken any. I said no and the registrar looked up the name of the drug and showed the consultant his findings, evidently not good! The exact opposite of what I should take.

They wrote to my GP and i was called into the surgery to receive an apology, just goes to show just what you said, trust your own instincts, no one knows everything!

Sopx

[wiserlady in reply to Sops]

Wow. fascinating. How did id tall turn out in the end and what was the medicine they had given by "mistake" that you decided not to use?

The bit about being called into the office for an apology made me laugh. I dont drive and I would have to get a taxi cab and a lot of struggling to get there and back. They would have to come to me or say it on phone or write to me. Anyway I would not close up my own business for four hours and lose four hours of income to go there for that.

[Sops in reply to wiserlady]

Exactly. I am sorry to say i don’t remember what t was, but it turned out to be what you give to extreme asthmatics and enlarged your airways quickly in case.of an attack. My airways are motorway sized so really bad.

i was asked if i wanted to make a formal complaint, but as you say time is money and effort so I declined and have not seen the pharmacist since.

More things to worry about now, tearing around to sort out my affairs before lockdown on Thursday.live alone so no one else to do it!

Stay safe, Sopsx

[wiserlady in reply to Sops]

oh dear. im sorry to hear you have so much to do, and on your own. at least i have my partner who does a lot for me since ive been too ill to do it. take care.

[Sops in reply to wiserlady]

You too, good to talk,

Sospx

[wiserlady in reply to Sops]

thanks, its been good to chat to you, you are friendly and sensible, rare combination. I will be looking here again during the day tuesday, hope you are ok and have a good day.