Hello all. Just an update. It’s over a week since I went to A & E & things are improving a bit & I’ve been out of bed but still feeling rubbish coughing & my chest hurts. I had 2 courses of antibiotics ( Doxycycline then Amoxicillin) which I was due to finish on Thursday so I sent an E mail to our GP’s asking for advice as it’s Easter. They made me an appointment to see a locum GP. She listened to my chest & said it’s not an infection so you don’t need any more antibiotics. She said what the hospital GP heard was not infection but Bronchiectasis as they sound similar 🤷🏻♀️ I told her I wouldn’t know & I didn’t know much about it as I hadn’t been seen since I was diagnosed with Bronchiectasis a few weeks before lockdown & asked if she thought I should be referred for advice. She said definitely not & that if she sent a referral to Respiratory they would throw it out. She said if she has any questions or concerns that she will E mail the Respiratory team for advice. I asked her a few questions & her response was look on the NHS website 🤷🏻♀️ How on earth am I supposed to know if I’ve got a chest infection or is it Bronchiectasis. I’m feeling let down & more confused than ever.
Bronchiectasis or Pneumonia - Lung Conditions C...
Bronchiectasis or Pneumonia
Hi Otto11
Iam so sorry you are still feeling unwell. The care you have received , recently has been appalling.
I just don’t understand how the locum doctor can say it’s not an infection, just by listening to your chest. Who says she’s correct with her diagnosis. How can she say it’s not an infection. Even if it had been bronchiectasis I always thought flare-ups needed antibiotics to stop an infection making the lungs worse. The locum doctor should have sent off a sputum sample. It could be pseudomonas.
My advice would be, if you can, to try and see your own Gp on Tuesday. The Gp should send off the sputum sample to treat you accordingly. If it’s an infection you need more antibiotics. If it’s not you need further investigation as to why you still feel so unwell after 2 lots of antibiotics. If it’s the bronchiectasis then you need to have a plan and treatment to manage your condition.
I don’t think the locum doctor should have told you to just look at the nhs website, that’s not supporting you, you needed answers and were, entitled to be given more information. You will probably get more information, on this forum from the people who have experience with bronchiectasis.
Also the pain in your chest could also be muscular pain due to constant coughing, this puts strain on the chest muscles.
I hope you get the appropriate treatment soon and hopefully you will start to feel a lot better. Take care of yourself. 🌹🌷
Issy x💜
sorry for long post.
If you still feel poorly maybe gives 111 a call. They will give you advice. Bronchietasis at times seems to be dismissed by Gps because it appears they dont know a great deal about it.Unfortunately we have to fight our own corner. If you had and xray at A&E they will know what has been going on.
Even when my Bronchietasis is playing up I feel really awful. I am on azithromycin 3 days a week all year round which has really helped.
111 is there if you are poorly and write a list of things to discuss with Gp,consultant, or respiratory nurse and hopefully get the advice help you need.
It takes time to recover unfortunately.
Thanks I doubt I will be calling 111 again as its their fault i'm in this mess. I have got their e mail to put a complaint in. I'm sorry you are taking Azithromycin all year but glad its helped. Until now I havn't really had any great problems with my Bronchiectasis & take Carbocystine. It would be good to have a respiratory nurse though which is why I asked the GP if it was possible to be referred. This group have been great with their help & I will have to do some more research. I think you are right about taking time I'm not very patient.
Thanks Issy22
I did have an X Ray at hospital last week but havn't had any results yet. A & E said I had flu but its almost 3 weeks that I have been unwell now. Unfortunately we don't have hardly any GP's at our surgery anymore since Covid when most left. We are lucky to be seen at all tbh & the last 2 times it has been a locum. You are right about the sputum test I forgot all about that. Hubby must have forgotten too as he was with me. I'm taking it easy & keeping my fingers crossed.
If it is flu unfortunately it may take a bit longer for your body to recover. Did you take the tami- flu ?I hope you start feeling better soon, you have suffered enough now. 💐xx
Thanks. It was confirmed flu at A & E from a nasal swab so they sent me to see a GP there. The A & E GP sent Tami flu prescription to Boots but Boots didn’t have it in stock & it took 4 days to get it in. As I’d already been ill for 2 weeks I didn’t start them when I got them on Wednesday & the GP I saw on Thursday said they need to be taken within 2 days of symptoms so not to take them x.
Flu takes some getting over whn have comorbidities too.do research bronchiectasis,and most importantly is lung clearance - look at aluk website.signs of infection is usually increased mucous,change in viscosity & colour,raised heart rate.unfortunately bacterial lung infections r often on back of colds,flu,covid etc so best to avoid them as much as possible.
Hi Otto, if you have been diagnosed with Bronchiectasis you need a bronch specialist not a respiratory doctor so do speak with your GP for a referral. The bronch specialists are usually to be found at big teaching hospitals so hopefully you have one near you.
It’s so important to keep on top of infections and you need support not a locum GP who clearly isn’t familiar with lung disease. Please ring your GP Tuesday and insist on seeing your own doctor.
Hoping you do get the support you need but please don’t give up fighting for yourself. Take care. Xx
Thanks sassy59
I was diagnosed with mild Bronchiectasis in 2020 but had only a phone appointment in 2021 with a respiratory consultant who said to treat it like Asthma. Unfortunately we dont have named GP's anymore as most left during lockdown so its pure chance who you see if anyone as its mostly phone appointment or send in a phot & a prescription is left at reception. I won't give up though.
I am sorry you havent been receiving the care that you need Otto. It disgraceful that we are left to our own devices, in fact because my local hospital discharged me saying there was nothing more they could do for me I decided it was time I took Littlepoms advice and got a referral to Wythenshawe to see a doctor that knows about bronch and boy has she put me through all the blood tests and breathing tests and has said that i have developed asthma along with my bronch, which is known to go hand in hand with rheumatoid, so now waiting for my gp to issue inhaler. I do hope you get back to your gp and let her know how badly you have been treated and insist on a referral x
It was a real loss to the group when Littlepom left wasn't it as she was a great friend to me!
Back in February I got told by the surgery one Thursday morning that my prescription would be ready on the Friday afternoon at the local pharmacy and I waited for the pharmacy to contact me to say it was ready but no they didn't and I got worried and rang the pharmacy to check it had been received there and no it hadn't and I was thankful I had the sense to ring and check and not go on what I was being told and avoided a wasted trip out and looking stupid!
Thankfully I had the sense to book a medication review with the gp and got done prescriptions sorted out in good time so I wasn't left without!
Last Wednesday I received the text from the local chemist saying the prescription was ready so Thursday morning I was that way anyway so went down to collect it then and looked at the date on the prescription and it said it was issued on 28 February and I had only just received it on 27 March and I was really cross but thankful I had the sense to use my own initiative rather than go on what I was being told!
Thankfully I have 3 months supply of medication at home to keep me going but what a palaver!
Grief that was a long delay on your precription. I know the chemists are rushed off their feet now. My gp surgery looks after a big area and all the new houses means everybodys workload has increased, its really not fair that when new housing estates go up there is nothing to say there must be a new gp practice along with a chemist. The country is failing miserably and wish we had a government to sort this out x
What the surgery have done is shut the branch surgery every Wednesday at 1pm which I don't think has helped and moved most of their reception staff to work in the main surgery!
At the branch surgery nowadays they have one member of staff on the desk who I feel sorry for to deal with all kinds of queries and booking in patients when they used to have a couple on the front desk doing queries who have been moved up to the main surgery to work!
Some patients have sworn at the staff over this as they aren't very well and frustrated!
Thanks Izb1 like you have RA & Asthma but was diagnosed with bronchiectasis in 2020 after a CT to monitor my lung nodules showed it up. It was just after a bout of Pneumonia in 2019. I did ring our local teaching hospital with a Bronchiectasis Consultant at Leeds but although the nurse I spoke to on the phone was lovely she said I would need a referral from my GP. the locum GP I saw on Thursday is writing a prescription for a new inhaler to replace my salbutamol but I don't know which one yet. I keep on trying & will ask again if this dosn't clear up soon.
That's appalling, she can't just overrule hospital doctors. Grrr. I've never ever heard that bronchiectasis can be diagnosed through a stethoscope either 🤔 in all 11 years of being on this forum. I also believe she's wrong about a consultant throwing you out. It used to be that the N.I.C.E Guidelines recommendations were that with bronchiectasis you must be referred to a consultant (preferablyone qualifiedto treat bronch), have biannual reviews, have rescue antibiotics on your prescription, forms & sputum pots for testing and something else which I've forgotten.
If I were you I'd avoid that GP (I certainly wouldn't take a child to her) and call the helpline 0300 222 5800 on Tuesday for advice. In the meantime don't hesitate to contact 111 if your temperature goes up or difficulty breathing or 999.
Shocking
Edit: a CT scan is another NICE recommendation
That's it if there's a gp at the surgery you don't like you don't see them again!
Thanks. I am already diagnosed with Bronchiectasis just before Lockdown. I had a CT to monitor lung nodules & after 3 years monitoring they found mild Bronchiectasis on the final CT. Because of timing I had a phone appointment with Respiratory team about a year later. The consultant said as it was mild just to treat it like Asthma & I was discharged. So the locum GP I saw on Thursday didn’t diagnose Bronchiectasis she said she could hear it when listening to my chest. I didn’t know you could hear it. As I was there I thought it would be a good time to ask for a referral but it fell on deaf ears. Unfortunately if we get an appointment at our GP’s surgery you don’t get a choice of who you see or when 🤷🏻♀️ We can’t even ring our surgery either our calls go to a call centre who pass a message on 🤷🏻♀️ If I get a temperature again I will go straight to A& E though.
Hi, Sounds as though you are talking to people who do not really know what bronchiectasis is. Only way for an accurate diagnosis is with a chest scan. Until that is done then neither you nor your doctor knows what treatment is required. Bronchiectasis does not just appear overnight. And there is no cure for it, only the means for treatment. Keep on nagging your GP. Enjoy the Easter weekend, Chris.
Hi thanks. Sorry if I’ve misled you. I was diagnosed with mild Bronchiectasis by CT in 2020 but as it was lockdown I wasn’t seen but I had a phone appointment when the consultant said just to treat it like Asthma. My GP wanted to put me on Azithromycin but I refused & asked him to ask respiratory team who wrote back saying to prescribe Carbocysteine. That was 4 years ago
Hope you have a good Easter too.
I’m so sorry you have been treated so badly yet again. Most GPs know next to nothing about Bronchiectasis. Certainly can’t be diagnosed with a stethoscope. If you had pneumonia it will take some time to get over it. So be kind to yourself and take the rest that you need. As Littlepom would have said find the name of a Bronchiectasis specialist at your hospital and ask your GP to refer you. I hope you start to feel better soon.
Thanks. I was diagnosed with Bronchiectasis in 2020 by CT & discharged after a phone appointment as it was lockdown. No one has ever told me you can hear it with a stethoscope. I wish I could get to see a specialist for advice but being mild our GP’s don’t think it necessary 🤷🏻♀️ I will keep on trying though.
My Bronchiectasis is also mild but I’m, like you, immune suppressed due to biologics. I see a respiratory doctor who specialises in my autoimmune disease every 6 months. Usually do lung function at the same time. If I need iv antibiotics he will ask the Bronchiectasis specialist at my local hospital to sort that out. I’ve never been told that you can hear Bronchiectasis with a stethoscope either! My immunologist advises my GP which antibiotics to prescribe me and these are on my repeat prescription. They are also reminded by my consultants that I should do a sputum test when I do have an infection. And know I’m really lucky in the care that I get but you were treated so badly at the hospital and you’re still paying the price of not getting the X-ray. Blood tests will show if you have infection and an X-ray would still show if you had an infection. The last time I had pneumonia it still showed up on x Ray 6 weeks later. I’m sorry but you are being fobbed off.
Have you had a sputum test carried out, to see if you have a bug, and if so propose the RIGHT antibiotic to combat it?
Hi Otto, I think that's dreadful. Of course you need to see a Bronch specialist. I see mine at least twice a year for check ups and other appointments in between. Hope you manage to get referred when you see your own GP 🤞xxxx
Hi Otto11, sorry you are feeling unwell still. I suffer with Bronch and my usual emergency AB Clarithromycin which has always worked for me until 2 months ago when I started with an infection. I sent in my usual sample and started my emergency meds. 10 days later the doc phoned to say I was taking the wrong AB that the lab had tested my sample and I should change to another for the next 2 weeks. Thank goodness it worked as I had been ill on and off for the past 9 months. The reason I am telling you this is a) we Bronchs need to recognise when we are starting an infection. b) some Gps do not understand Bronch. c) we bronch patients need to do the sputem test and take it to the surgery before starting our emergency meds. Also, do you have a Bronch specialist? If not ask your own GP to refer you. Tell the forum where you live and someone will know a specialist local to you. I do hope this has helped. The one thing we all learn after diagnosis is you need to be proactive about your health and if necessary insist (although I do hope this will not be necessary). Take care Maximonkey
Thank you for your advice. I had been taking Doxycycline for 5 days when I called 111 who told me to go to the GP. She told me to go to A & E the following day as my temperature was 38.6 & gave me a prescription for Amoxicillin. A & E said it was flu so sent me to see a GP there in A & E who said it was Pneumonia. Then last Thursday I saw a GP again who said it wasn’t Pneumonia it was Bronchiectasis she could hear. She said I didn’t need any more antibiotics. Hence my question as I’m confused. I’m trying to be proactive but getting nowhere.
Hi Otto, so sorry you seem to be going round in circles. I hope by now you have managed to see your own GP and have now been given the correct meds. Locums are OK in the normal world but we Bronchs need to know our doctors understand our condition. Over the years I have been told I have COPD, bronchitis etc all because they do not understand Bronchiectasis. If you haven't been able to speak with your GP yet does yoursim practice have an asthma nurse or similar. My surgery does and sometimes the reception say I cannot speak to the doctor but I can be seen by the Asthma Nurse (I am now on her list of patients). After speaking to the asthma nurse he/she will bring in a doctor if she is concerned. I find I see the doctor on every visit, so it works for me. Good luck and take care, Maximonkey
Hi thanks for your reply. Today is the first day I feel a bit more human thank goodness. I havnt managed to see a GP but havnt tried as almost all of ours left during Covid so our surgery is mostly locum’s. Odd you should say that about COPD as my Asthma nurse at my yearly review diagnosed COPD which went into my notes. That was about 6 or 7 years ago. The following year a different Asthma nurse said she couldn’t understand why & changed my diagnosis back to Asthma 🤷🏻♀️ I should have an Asthma review this month so will see if I can speak to her about it. Thanks. Take care x
Because my Broch is worse at the bottom of both my lungs you cannot hear the infection until travelled up to the middle working part. There are so many variables on diagnosis re infection. Not hearing one does not rule out. My Gp is v good and will prescribe if symptomatic-to stop it spreading. I also have a low Immune system. I need Co Amoxiclav not Amoxicillin as does not knock bugs out enough. If you feel unwell I would call Gp when able to. Good luck and take care. xx
Thank you. That’s really helpful. I have no idea about these things. This is why I’m asking questions. The hospital GP said both lungs were dull at the base but the GP I saw on Thursday said she could hear Bronchiectasis. I’m also immunosuppressed on Biologic injections for RA. I will call them again if I’m still unwell. x
Yes I would. My lung pysio explained my lung base scenario. I was puzzled for so long on that one. Also well done Gp if could hear Bronch some do not. Biologic adds to your risks. I have done four Dmards and can be tough. Take care and hope you feel better soon. xx
Hi otto11
So sorry that you are feeling poorly and I see that others are quoting Littlepom who gave us all such wise advice. Form my experience it would seem that you need a consultant who specialises in Bronchiectasis and they can usually be found in your nearest teaching hospital. You should then be provided with a hospital respiratory nurse as a contact and also be shown the correct physio to help you at home. If the GP provides you with a sputum sample pot, please try to convince them to send it for the 5 day culture rather than the usual 3 day culture as the 5 day one will show pseudomonas and the 3 day culture probably won't. My GP found it on the sputum test drop down list where he chose: cystic fibrosis and then non-cf bronchiectasis which will give you the 5 day test. I had gone for almost a year on various 1 or 2 week courses of antibiotics with little success. Once the pseudomonas were found, it became mush easier to treat me and also to keep them under control.
I hope that you get the help that you need and soon start to feel better.
Take care x
Thanks for your help. I’m sorry you had to go through so much to get Pseudomonas diagnosed. I will ask them to send a sputum sample next time I just forgot. I’m up against a brick wall with my GP asking for a referral. I’m due an Asthma review this month at the surgery so may ask the nurse 🤞I get somewhere. x
I'm sorry you have been/ are being so messed about. You've had lots of good advice here and lots of good wishes. It is rotten that you have to be so proactive when you're feeling bad. I hope this nightmare will end soon. xxx
Shame on your GP!
Hi. I just got done having something similar. They had to do a bronchoscopy. do you have a Pulmonologist?
Thanks sorry you've been unwell too. I don't have any Respiratory drs now as I was discharged after the final CT of lung monitoring as I had nodules for 3 years. that was when they diagnosed the Bronchiectasis. I had a phone follow up during lockdown & the consultant said to treat as asthma as it is mild. I was then discharged
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