Feeling alone battling with early stage bronchiectasis

[Puffed_out]

I have been on an incredibly frustrating journey over the last three years with the health profession trying to get them to take the symptoms I have been experiencing seriously (breathlessness, continuous mucous production, back to back chest infections, loss of bladder control, constant productive cough, fatigue, rib cramps), finally after a bout of Haemophilus Influenza followed immediately by Psuedomonas a concerned GP has pushed for all of my tests to be repeated and I’m about to return to the specialist to be reviewed again and I expect a diagnosis of bronchiectasis to be confirmed.

What I’m struggling with most at the moment is not knowing anyone else with these symptoms who understands the impact that living with this chronic condition can have, especially when working and trying to function normally given it’s unpredictable day to day impact. I’d be grateful for any tips or advice as I’m finding day to day life pretty exhausting at the moment and want to make sure I’m requesting the right support and looking after myself as well as I can.

[Firefly25]

Hi Puffed_out- sorry to hear you’ve been having such a difficult time and I hope this forum will go some way to making you feel less alone.

I too was suffering from many of the symptoms you mention- frequent chest infections, fatigue and rib pains etc. I finally managed to get a referral to a consultant and a respiratory nurse just before lockdown and sputum samples and a ct scan confirmed bronchiectasis and pseudomonas. I read everything I could get my hands on and learned that daily airway clearance is vital to clear out the infected sputum. I nebulise with 7% saline first (had to push for this from consultant) which takes about 5 mins using a Philips innospire go nebuliser (had to buy it myself) and then do about 30 -40 mins airway clearance using an aerobika (which I asked the respiratory nurse for). I do this routine morning and evening every day - it’s a nuisance and time consuming, but I have been so much better since I started and haven’t had an infection for ages. I know it’s hard to fit into a busy day but I try to make it into a relaxing/useful time for myself by listening to music, watching YouTube etc or by dealing with emails.

I sterilise all my equipment after each use in a baby bottle steam steriliser and drier (necessary to kill the pseudomonas) and I’ve just got into a routine now. I definitely feel more congested if I ever miss a session.

I don’t know if this helps in any way, but I completely empathise with what you’re going through. It can be a difficult illness to come to terms with and manage, but things do get better with the right management!

Take care and good luck x😊

[Puffed_out in reply to Firefly25]

thank you so much that is most helpful and glad to know I’m not alone! I have an acapella which I think does the same as the aerobika and I will ask my respiratory specialist about adding the nebuliser routine in. I’ve also been washing my equipment in really hot water but the baby steriliser is a great idea as I know pseudomonas is a really tough bug to crack. Appreciate your advice

[Mooka]

I’m sorry you have been having such a bad time. If you do get your diagnosis you need to have a respiratory doctor that specialises in Bronchiectasis- not all respiratory doctors do. You should be referred to a physio to help you get rid of the mucus. In the meantime look on YouTube for active cycle of breathing. I’m afraid if you have pseudomonas you are likely to get recurrent infections from it until you get it under control. Look at the BLF website they have a good brochure on Bronchiectasis and join the lung conditions thread on healthunlocked. There are mantle helpful ladies on there that have had Bronchiectasis all their lives. Once you get on top of the mucus clearance and infections you can get back to a near normal life. Bronchiectasis is quite rare and even the medics don’t understand it but you’ve come to the right place for support. Good luck 🤗

[Puffed_out in reply to Mooka]

thanks for your advice there is only one respiratory specialist where I live (Guernsey) so I’m stuck with him hence why I’m not getting the care I need however will push for this to be addressed when I see him next. Strangely he did refer me for respiratory physio even though he didn’t diagnose me at the time so I’ve been taught the techniques, I think we’re all just a bit confused about why I’ve been asked to do these techniques without knowing what we’re dealing with. I have found that it is poorly understood over here

[Mooka]

As far as I am aware bronchiectasis can only be diagnosed via CT scan. Please ensure if you need antibiotics you get a full course of two weeks. If you have pseudomonas you will Ciproflaxin of an iv antibiotic. I agree you do need a definite diagnosis. I hope you get on better on your next appointment.

[Puffed_out in reply to Mooka]

Thanks I have had a CT scan twice, once two years ago which had some signs and then more recently which contain far more signs of retained secretions and plugs etc plus a bit of tube widening, I just need him to interpret them and send me down the right treatment track. I also think I should be having a longer course of antibiotics than just 5-7 days which the GPs have been prescribing. I’ve done another sputum sample so no doubt it will still show on that which might help

[Mooka]

usually a radiologist would translate the ct and send a report but I appreciate it may be different on Guernsey. The protocol for Bronchiectasis is 14 days of antibiotics. Sadly neither GPs or general respiratory doctors are aware of this.

[Puffed_out]

It is the same process here, last time the radiologist indicated mild bronchiectasis but the specialist decided not to apply a diagnosis of bronchiectasis and instead advised me that a genetic switch had triggered mucus overproduction and blamed my allergies! I didn’t buy it at the time but tried to make some changes to diet, lifestyle etc and nothing made any difference. So frustrating as we’ve wasted 2 years whilst I deteriorate