Concerned daughter - bronchieactasis

[Natashadawn]

Hi everyone, hoping someone could give me some advice. My mother is 69 and was diagnosed with mild bronchieactasis about 5 years ago. She's always kind of managed, taking antibiotics when she's had an infection, but recently, she had 4 weeks of cipro, which didn't help and started causing tendonitis, was told by her gp to go to a and e as she's so chesty, and full of crackles. She was admitted for 3 days, given tazacin, but they said they weren't sure she even has an infection and it's just that she's not bringing up her the mucus properly and her chest x ray was clear. She feels like she has an infection, or not her norm, is constantly bringing up phlegm and is very chesty and wheezy, and I really just don't know what to do. The sputum samples she sent only showed yeast, but they said they wouldn't do anything for that as her mouth was clear, but could yeast really make her feel so unwell? She also had colonised pseudomonas.. but is this what is causing it? I really don't know how to to help or advise her and this round of unwellness feels different to anything she has experienced before. Any advice or suggestions would be appreciated. She has an appointment with her consultant in a month but it's always someone different and she seems whoever annually.

[Hidden]

Pseudomonas is dreadful, I usually get 15 days in hospital, on Tazocin. The last time I also had Pneumonia so Tazocin didn't work, so was put on Meropenham. If it was yeast, it can be quite nasty. It is annoying when you see a different person every time. You could give the free helpline a ring, and talk to a qualified nurse. 03000 030 555, or visit the website blf.org.uk/

[Natashadawn in reply to Hidden]

Hi poem, thank you, I will get her to try callling them. How did you know it was the pseudos causing you to feel that way, or was it because they found it from your sputum results? Is meropenham also done via iv? Her gp today told her to go to the rapid access unit as her chest sounded so bad, but all they did was offer her a few nebulisers and the doctor said to stay indoors and not to go out. Sigh.

[Hidden in reply to Natashadawn]

I was rushed into hospital with a temperature of over 100 degrees c, delirious, my GP had already sent a sputum sample in which the hospital accessed. It was Pseudomonas, so they put me straight on intravenous antibiotics. 15 days later they sent me home with Cipro, and a drug to nebulise, Colymicin. Had to stop Cipro because of Tendonitis. Yes, Meropenham is intravenous.

[Hidden]

Hello, it very much sounds as if the pseudomonas is having a party. Once a person is colonised it doesn't go away and can get out of hand. As the cipro hasn't worked it sounds as though she needs something else, which will mean IV. A few days of tazocin is not going to get a hold on it. If she has a full blown exacerbation she will probably be finding it difficult to get the mucus up anyway so she must spend extra time and effort to do that.

I get tendonitis now when I take cipro but am just very careful moving about and it rights itself afterwards. It can be a concern though and a different treatment would be preferable.

Unfortunately many doctors do not know what they are looking at with bronchiectasis, even hospital doctors. Does she have a bronchiectasis specialist? Not a general respiratory consultant as they tend to be as ill informed as most GPs. If she does have a bronch specialist give their secretary a call and explain how she is. The consultant should admit her for treatment.

Her GP sounds absolutely useless and needs advice on how to treat her.I suggest that you find the name of a bronch specialist ( if she doesn't have one). They are usually based at large teaching hospitals. Go to the GP with the name and don't leave until she has the referral.

One thing is sure, she cannot go on without the proper antibiotic therapy.

[Natashadawn in reply to Hidden]

Hi littlepom, thank you for your reply.. in my blurt of a message, I forgot to add that they had found the pseudos in a sample she had done a few months earlier, but in the current sample, they only found yeast. Do you think it could still be the pseudos even though the sample was clear? She does bring up much more phlegm nos than before.. it all just feels very confusing. She had been under a Bronchieactasis specialist initially but that dr left and I feel now it's just an appointment within the chest clinic. I'm not sure if you are based in London or Surrey who you'd recommend she ask for a referral to?

[Hidden in reply to Natashadawn]

It does seem to be the pseudo which is making her so poorly..yeast is often in the mouth from taking antibiotics and inhalers Your Mum really does need a bronch expert. The Royal Brompton is probaby your best bet to find one in the SE.. Also I insist on seeing my named consultant not a registrar or someone I don't know or they don't know me. Lab tests are notoriously unreliable and with bronch you need to trust how your own body feels.

[clematis5932 in reply to Hidden]

With respect littlepom you often mention not to see registrars only Consultants. I do not know if you pay privately to see your Consultant. When my letter comes to see Consultant it always says " To see consultant or a member of his team the last time I went I saw the senior registrar when I asked why I was not seeing the Consultant I was told that she would love to see everyone herself but that there were to many patients. I must admit I was completely happy with the appointment with Registrar.

[Hidden in reply to clematis5932]

No I don't go privately. When I get to clinic I ask the nurse to put my filw on my consultant's pile. She has known me and my particular problems for eighteen years. Her registrars come and go frequently and it would be a waste of time for me to go in to see them when they will not know about me. Whatever you are happy with is up to you.

[Hidden]

well it took me since 2014 to clear the pneumonia and Pseudomonas with a start of and now for something completely different community IV I went in for the day to have a cannula inserted in my arm and the first IV was run through while I was in the hospital just to make sure the Tazocin was OK for me and it was, then came to discharge with a heap of stuff and notes for the IV in the community team, once I got used to the IV in the community team I had them back twice. My GP decided last year to treat my flare-ups differently, he gave me a handful of lab forms and a box of empty sample pots, so when I felt like a flare-up coming on I would send a sample off and wait for the verdict, I took the offer when it first came out of linking up with my doctors computer so it was easy to check read his comments if he said to start RP I would then do that any other comment such as make appointment not always an easy one.

[Natashadawn in reply to Hidden]

Hi anthony634, thank you for your reply. My mum actually does the same as you wit the spare bottles and sending a sample as soon as she doesn't feel right. Have you been in the situation where you haven't been feeling like your norm, but the sample comes back as normal? that seems to be her issues. She has sent so many samples this time round, but nothing seems to be coming up.

[Hidden]

yes I get that often they are basically plus cells quite often what antibiotic I have grown immune to also a sample of one of my lab reports are as follows:-

Comment: (RJK15844) - Make routine appointment, Gram: Not Applicable, Culture Antibiotics, [A][B][C], A) S. aureus MRSA +++ Ciprofloxacin R, B) Normal skin flora +++ Flucloxacillin R, C) Enterococcus sp + Doxycycline R, Vancomycin S, Clindamycin R, A)- Please assess clinically, Patient MUST be barrier nursed, if admitted to hospital., Meticillin-resistant S. aureus isolated., As previously isolated, C): Probable colonisation only.

as you can see I also have the superbug which is good in one way you kinda get streamlined and isolated then they have to opt for what to give me this time it was the hospital only one vancomycin, this time the IV team could not attend me so I spent my time in the local hospital.

[cofdrop-UK]

Hi Natasha and welcome to you and your Mum.

Good advice from previous posts.

Agree with LP re the Royal Brompton Hospital. I can give you a couple of names by PM but they are both on the 'soft launch' of the Patient Priorities Bronchiectasis, which I had the pleasure of being involved with as part of the patient advisory group. One can be found at the bottom of Bronchiectasis within the Videos (Adanced Technical) and the other under About. Both very proactive in the BE field.

europeanlunginfo.org/bronch...

Don't get their comments with regard to the yeast If it's in your Mum's sputum. It does sound as if your Mum is being short changed. Pseudo can be eradiated but if colonised then it needs to be treated and kept in check. I too get tendonitis with Cipro and so would have IVs. Last time I had Tazocin for a couple of days with a plan to go home and do my own IVs, but apparently it is not now licenced to do yourself at home. My consultant changed it to Meropenem and so I could get out of hospital YEAH!. 3 days would be neither use nor ornament.

Your Mum needs a proper review from a respiratory consultant with a special interest in bronch and would start from scratch. I am sure you will both feel better when she has good care. Your Mum and yourself need to be your own advocates with bronch.

Wishing you both well.

cx