Daughter’s lung biopsy

[Worried49]

hello, I hope someone can help me. My daughter has had mild asthma since age 6 and she is now 18. Always seemed well controlled. However over the last few years she’s had recurring chest infections and in 2021 had a chest X-ray and ct scan, just showing 2 v small lung nodules told normal and some small evidence of a recent infection, so nothing serious showing. The bacterial chest infections continued, and she had chest physio to reduce sputum although not excessively productive a Bronchoscopy was recommended. In October 22 she had this and it showed inflammation on a small area on her right lower lobe. It was narrow area. A repeat bronchoscopy was carried out last Friday and the area is still inflamed although not got any bigger. The description was that it looked chronic. We are waiting for results of a biopsy. Can anyone relate to this, I’m obviously so concerned. I should add that she tested negative on a sweat test for CF. Her symptoms are intermittent cough ( sometimes productive) and throat clearance, sometimes crackles when she has an infection. Antibiotics do seem to do the trick, sometimes given steroids if the infection causes her asthma to flair up. She’s getting an infection roughly every 2 to 3 months, chest physio not really reducing them, though I don’t think she sterilises her equipment like she should when at university. Her lung function tests are good and her breathing is good. Sorry for the long post.

[Hidden]

I am not a doctor but your daughter's symptoms sound very much like those of bronchiectasis which has not been diagnosed properly. Especially as she has had asthma most of her life.I suggest that you look for a bronchiectasis specialist on the website of big teaching hospitals. Take the name to your GP and insist on a referral. Only these specialists can diagnose bronch from a ct scan properly and give the right treatment and help with self management. I'm afraid that GPs and general respiratory consultants do not have sufficient training and experience in this condition and many radiographers cannot recognise it on scans. There are quite a few of us on this forum who have had bronch for most of our lives, manage it well and live full lives. These specialists are also so experienced that they can diagnose and treat any other condition that may be troubling her. I'm afraid that we have to be very proactive and vociferous in getting the correct treatment. Good luck.

[Worried49 in reply to Hidden]

thank you Littlepom, she has been referred to the royal Brompton and the professors bio lists Brochchiectasis as a condition he treats so I hope he is a specialist in this area. We are seeing him on 6th.

[Hidden in reply to Worried49]

That is very good news. I'm sure that your daughter will get very good care at the Brompton. Please come back to us and do encourage your daughter to make contact with us if she needs ongoing support. We have been walking this path for a long time and are familiar with its ups and downs.

[papageno in reply to Hidden]

Agree entirely. I have been living with Bronchiectasis for 23 years. My main advice would be to ensure your daughter establishes a good rapport with the Brompton specialist she sees on the 6th to have a continuum of care and treatment supervision. It is possible to reduce flare ups with good self-management and consensus with the specialist on the symptoms. This does enable appropriate use of antibiotics and steroids. GPs are simply not qualified to engage in this care pathway.

[ks1966]

I think it may be bronchiectasis too. The trick is to keep her lungs clear. I tried most of the exercises that help me cough up sputum and the one that worked for me was to get on ask fours, take a deep breath and slowly exhale. On the 3-4 round you’d start to hear crackling noise from the lungs. And few breaths after that the sputum should come out. The less sputum hanging around the lesser infections she’ll have. Good luck.

[helenlw7]

I don’t have any medical qualifications but from my own experience it sounds like bronchiecstasis. My diagnosis was quicker, just one x ray seen by a bronch specialist. I already had asthma and was in 4 inhalers which didn’t stop the cough or chest infections. For the last few years I’ve been on Azithromycin, an antibiotic, as a prophylactic, and have only had one infection since then and no more coughing.

[Alberta56]

I'm glad your daughter's got an appointment at the Brompton- one of the best for bronchiectasis. I hope and trust that they sort out sort out the appropriate medication, inhalers and other helpful devices (AeroBika for instance.) Good luck.

[Patk1]

If she's ok between infections,I'd not worry.having asthma she will show inflammation when its off,plus infections .sounds like they're keeping eye on her,which is gd.jusy going uni,change of life,different routine,lots of people,she will b prone to colds+ viral infections + asthma flare ups.just ensure she does self care+ jump on infections asap

[littlestarsmum]

I’m sorry to hear what your daughter is going through, friend. While I’m not a medical practitioner, I can relate to her health condition. I’m on steroids now, it has helped to lessen the infection. It’s good that she has an appointment, and it’s my prayer that she’ll get the best help soon. Stay strong, friend. Hugs.

[Worried49]

thank you for all your comments. I am beside myself with worry, just waiting to get results and see the specialist. It’s been over 2 years now since her first significant infection. It’s funny now when I look back, she often had symtoms of tight chest and especially in hot weather her breathing was affected. The gps said nothing wrong and she was diagnosed with health anxiety, panic attacks. We were under an asthma speacialist who also said it was upper airway inflammation.

[Digger0]

I was "diagnosed" as asthmatic 20+ years ago, and following repeated (5 or more a year) chest infections and being in hospital for a different condition, I was diagnosed as having bronchiectasis. This was 3 years ago and I am now on antibiotics Mon, Wed, Fri and (touch wood) have not had a chest infection ! My original diagnosis was via a local chest clinic! good luck at the Brompton!

[Digger0]

I forgot to add - these are the breathing exercises I do every morning physio-pedia.com/Active_Cyc...