Some insight to Bronchiectasis from other people.

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Well I've been poorly with chest infections and pneumonia for about 2 years. I do have asthma so thought it was that. But I decided I had enough of being given antibiotics after antibiotics. So I asked my GP if I could see a respiratory specialist. He sent for me this April and I had heard nothing for months. It got to August and still nothing. So went back to GP and finally 2 weeks later got an appointment. Went there had bloods, sputum, breathing and chest x-ray. Still don't know the results of those. I got sent for a CT scan and about month after that I got a letter saying there's evidence of Bronchiectasis and that he wanted to do a bronchoscopy. That was on the 11th Dec. I'm back to see the consultant on 15th Jan to get those results.  I have been unwell during those months and have been on antibiotics and steroids. But for the last two weeks I have had pain in my breasts/under breasts (ribs) and back. I was wandering if this has anything to do with Bronchiectasis? If anyone could give me some advise it would be much appreciated. 

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  • Posted

    Hi apanda80,

    I've had a long haul since mid October this time and I'm not out of the woods yet. Mid December I too started with right rib area pain and a few days later it was going round the back... A GP said he thought it was the residue of the infection because the right lung still had crackles and advised me to take paracetamol. I had a feeling it could be pleurisy? Last Weds I saw my preferred GP who really knows about bronchiectasis because her mother suffers too and she confirmed it was pleurisy. I've been given ciprofloxacin for 14 days (both lungs bad again) and 30mg steroids for 7 days, blood test and sputum sample. I go back on Weds for the results and see how the lungs and breathing are doing. 

    I'm due to see my respiratory consultant 11th January. (I got an emergency appointment with her 1st Dec and she saw me weekly until 19th)

    I've also had a respiratory assessment with a respiratory nurse. That dept have been ringing and checking my status and giving me support and advice.  

    That's a long time to wait until 15th January if you had got pleurisy...it's painful!! Can you see your GP? 

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    • Posted

      Hello janet24,

      Sorry to hear your having a bad time too. It's quite frustrating isn't it.

      My GP practice is a waste of space. I went to see my Dr and he said what would you like me to do for you. As I was only there the week before and he said I had pneumonia and gave me 2 weeks worth of steroids and antibiotics (doxycycline). I started to feel worse and thought the antibiotics weren't working. So he put me ciprofloxacin.  I felt that bad I went to A&E had bloods, x-ray and ECG and they came back all clear. Which I was amazed with only being told 10 days before I got pneumonia. With that ciprofloxacin I felt horrendous on it. So had to come off that. Was on that for 5 days. Went back to see another Dr to tell me my chest was clear. That was a month before xmas. Then about 2 weeks before xmas I felt poorly again and had to go to a walk in centre. I was put on a weeks worth of antibiotics doxycycline again. I did a sputum sample and I got the results for that this week and came bk clear. I do have some doxycycline and steroids at home and started the antibiotic. As I don't feel like I need the steroids. I always bring up green/bloodish sputum. But this pain is new haven't had it before. I thought it maybe inflammation. What I have read. Also thought it could be something to do with the bronchoscopy. I have tried numerous times to contact my consultant and never get any where. Just have to wait till the 15th. As there are many more patients to be seen as well. I have also. Noticed I have a lot more acid feeling too in my throat. I've had enough waking up in pain. It does get you down and feel for the people who suffer from Bronchiectasis. 

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    • Posted

      I so agree, the GPs just don't have sufficient knowledge to help us. I'm fortunate with the only useful one at my surgery. 

      This said doctor said I've had too much doxcylcline and probably immune now so they're not prescribed now. 

      It's so hard when you can't get the much needed appointment from the consultant...mine told me she's now keeping spaces at the end of each clinic for emergencies.  

      Another anomaly is that I'm NOT a cougher...so that doesn't seem to fit with the diagnosis. But get very tight breathing. 

      I actually don't find many people of heard of this condition...

       

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    • Posted

      I'm the same hardly cough. I've had asthma all my life and never had a asthma cough.  Will try and phone my consultant on Tuesday to see if I can get an earlier app. I think it's a long time from Sept  to Jan to suffer. But if I have no joy will have to go and see my GP.  I have never heard if eiter. They say it's not a common illness but when you get on these forums there's a lot. Just hope my results are ok from the bronchoscopy. 

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    • Posted

      I started off with whooping cough aged 4, then pneumonia aged 13...parents that smoked etc and asthma all my life...I'm 66 now. So they say my damage is long standing. 

      I really hope you can been seen earlier, it's a worry when we have to wait. Re seeing the GP, I think we have to go in armed with our learned knowledge. As you say...they're a lot of us out there and during the last year that I've been diagnosed I've had to learn fast too. 

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  • Posted

    Yes- my pain is more in the back.On both sides. Where the lungs are. If I didn't know I had a lung disease I would have blamed it on muscle pain. Except I havent done anything that would cause ANY muscle pain! I'm always too tired to do ANYTHING! Besides, it never goes away.  Muscle pain goes away.... I just posted a few seconds ago about the pain, since I never hear of anyone mentioning pain. I know I can't be the only one!  (You AND I can't be the only ones!) I want to know what people do for it if anything. How long is this going to go on? (I've had it for months now) Have they talked to their doctors about it?  

    I've been coughing since I was a teenager. I'm 62 now. Ive had pneumonia 7 times. I've had CT's for years to check on lung nodules and they never saw Bronchiectasis before...until I started coughing up blood clots.I'm from Florida. I have Medicare.  Where are you from?

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    • Posted

      Coughing would make your lungs hurt.        I’m on Medicare too live in new york

      coughed up blood twice in two years.     Doctor in the states don’t know too much about our condition

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    • Posted

      Hello retirednana, 

      I live in the Uk. I really don't know what this pain is. I know that it is driving me insane and it's spreading around my chest and torso area. You just assume it has something to do with what you've been diagnosed with. Like you I have so many questions. I have written down so many for when I see my consultant. I can't blame this pain on a cough as I hardly cough. I'm now 37 but started with back pain between the shoulder blades and lung area. It stopped me doing things. Dr after Dr I was told it was muscular. After 5 yrs of being told it's muscular I decided to go private and see a chest specialist. He sent me for a MRI and bone scan and they came bk clear. Was very frustrated, but I started with chest infections a lot and pneumonia the last 2/3 years. My asthma is under control too so couldn't and can't blame that. For a year my sputum was horrid thick green and blood stained. That's when I thought this isn't right. So went to the Drs and ask to see a respiratory specialist. 

      Wow 7 times having pneumonia I thought 4 was bad. 

      I hope you get some answers. 

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    • Posted

      Hello Papillion,

      I hardly cough. So I would totally understand the pain if I coughed a lot. 

      I've been bringing up green/blood sputum for a year. 

      Will have wait and see what my results are from my bronchoscopy. 

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  • Posted

    I am sorry to hear your problems, it took 16 years to get mine diagnosed, when i was sent up to see the consultant at the hospital, he completely missed the BX and i did loads of other tests that took well over a year with the outcome that I Hyperventilated, in that year i was in Hospital with a chest infection and so nearly died with sepsis and pneumonia, i was on antibiotics and steroids neary continually for a year, when i ended up in hospital again , i had a list of all the antibiotics and steroids id been on  and pushed to say something is not right and at last they listened and i got sorted.. so if you know something is not right push and push till they listen. I hope you get everything sorted out , I do not have the problem of pain under my breasts . 

                   Take care Pam.

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    • Posted

      Hello pam81116 

      So sorry to hear what you have been through it's sounds horrible. 

      I don't understand why it takes so long to be diagnosed. I will be on the phone first thing Tuesday morning to my consultant. And hopefully get some answers. 

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    • Posted

      Hi pam81116,

      Some Drs are really helpful but most are not. There's a Dr at my GP surgery that should be retired. We know our own bodies and when you have had asthma for a long time you know if it is playing up. They should just take time out and listen to us. I understand they are busy and there's other people a lot worse off than some people are. But we are all human at the end of the day and need help. 

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  • Posted

    Hi apanda, Now I am diagnosed with BX , when I go to see a doctor they act as if they know all about it, but I think many do not, they all including the specialist respiratory consultant , didn't listen to me when I said ,"It is not like asthma, mine gets stuck and wont come up." that should have sent alarm bells ringing but it didn't and I said this on every opportunity as it was said I had asthma and I always said it was not.

                  Take care Pam.

                                        

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  • Posted

    Hi Panda. Don't forget that if you are at risk, you can get the pneumonia jab even if you are under 65. It's usually only available to those over 65. It's a one off injection. I suffered with severe chest infections and pneumonia, but once I was diagnosed with BX, I was able to get the injection.

    Good luck with your appointment on 15th.

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    • Posted

      Hi Susanne...I've had all the jabs and haven't actually found any protection...maybe it's just me? 

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    • Posted

      You've had the pneumonia jab?

      There may be different types of pneumonia and the jab covers the most common one. You're certainly very unlucky!

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    • Posted

      I've had this bout in and out of the left and right lung and now in both again since mid October. Pleurisy thrown in for good measure this time too...think my immune system is about shot!!! 

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    • Posted

      Hi Susanne M UK, 

      I had the pneumonia jab 10 years ago. I have the flu jab every year and to be honest don't see a difference. I thought the pneumonia jab was every 10years but it's a life time. I've had severe asthma since 9 months old. A lot of chest infections and pneumonia 4 times. So I guess my immune system is shot at. 

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    • Posted

      Hi Panda, it makes you wonder how well the pneumonia jab works. But like the flu jabs, it only protects against the most common strain. And the poorer your immune system, the more likely you are to pick up whatever is in your space.
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    • Posted

      Re the pneumonia jab...the nurse who did mine said 10 yrs but recommended that I renew it again at the end of that because of being 'vulnerable'.  Maybe worth checking on that Panda? 

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    • Posted

      janet24

      I asked about having it again to my GP and they said no. But when I go to see my consultant I'm going to ask him. 

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    • Posted

      Panda....

      It seems a strange one. I had a 10 yr one years ago which lapsed when I was living in Spain. I had the latest one done last year and they're supposed to be 'lifetime' ones now. But as I said the surgery nurse advised me to repeat it in 10 yrs. 

      Maybe your consultant will agree with that?  

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    • Posted

      janet24, 

      I thought that too but you take there word for it. But I will be asking the consultant.  Just a quick question do you have grey streaks in your sputum ? I have  had it a few times and I asked a Dr and he told me it was inflammation. So don't know that's what my pain is in my chest. 

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    • Posted

      No I don't seem to...if anything mostly clear, but usually hardly anything as I don't cough. The sputum sample I managed...about a 1/4" blob and froth I gather was candidia. The GP said  I'll still have the pleurisy pain for a long while...sigh. I still have 4 days ciprofloxacin and thankfully finished the prednesolone on Weds. 

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