Waiting anxiously for CT results- Part 2

[girl_DJ_b]

Hi all, you may remember my first post last week while I anxiously waiting my CT scan results and today I've had them. As expected there is some deterioration and there is some 'solid scar tissue around the airways in the lung bases, along with slightly more prominent dilation of the airways'. Is this common in Bronchiectasis as this is new to me in the 20 years I've had it?

I have my next appointment with the consultant towards the end of May but in the meantime, she has outlined that it would be appropriate to use IV antibiotics from time to time and I will need to be on a daily prophylaxis either Erythromycin or Azithromycin. I'm happy to do this to get on the front foot with exacerbations however one thing I didn't mention last week is that we are trying for a second baby currently.

My consultant is aware and is trying to support us with this however I'm obviously worried about the deterioration and being on antibiotics while trying to conceive or early pregnancy and the possible impact on the pregnancy. Has anyone been in this position before? With our first pregnancy, I was generally well and only need one treatment course of antibiotics for 14 days for the whole pregnancy.

Also, I wanted to mention that I received fantastic support from Littlepom on my first post last week and have been really saddened to hear that she has now left the group

Thank you

[Dottie11]

Broch does make the airways widen. Mine is on my base of lungs both sides. I take Azithromycin and find it really good. It has anti inflammatory properties also. I also take Carbocisteine to thin mucous. Sorry I cannot answer re pregnancy question. I am sure someone will be along with advice. Good luck. xx

[Dottie11]

Just to add if you have not been seen by a lung pysio and taught exercises I would ask. Plus learn the "huff" tech. x

[girl_DJ_b in reply to Dottie11]

Yes seen a physio and do I regular clearance I was taking Carbocisteine but advised to stop by Consultant as trying for a baby and it's not safe- hoping there's an alternative! xx

[Dottie11 in reply to girl_DJ_b]

That is something a learnt today. Thank you.xx

[janedivney]

I was on antibiotics and steroids all through my pregnancy. This was over 30 years ago, before there was such an emphasis on avoiding drugs ?(especially steroids!) I questioned it though, and the doctor said what would be REALLY bad for the baby would be an untreated infection and me hardly able to breathe! I had a perfectly healthy daughter of normal weight. What would worry me in your shoes is the energy two children need, and making time for airway clearance.

Yes, we’re all very sad about Littlepom too. The group is poorer for her leaving

[girl_DJ_b in reply to janedivney]

Thank you for your reply! My consultant has said this to me too but I can’t help worrying about what it could do to the baby especially in those first 12 weeks. I know I need to be fully well though xx

[janedivney in reply to girl_DJ_b]

Yes, despite what my gp said, and the obstetrician, I worried throughout too! Bear in mind though that a lot of the drugs we take have been around for decades. For obvious reasons they can’t test them on pregnant women to ensure they’re safe, but if there was a problem it would soon show up & they’d actually ban doctors from prescribing them to pregnant women

[peege]

Hi, just to add... you could Google 'paitient leaflet/info Azithromycin uk' & same for Erythromycin so you can see what they say about pregnancy & breast feeding. You could at least compare & choose one or the other. The other thing to consider is that if you get a chronic infection during pregnancy you'd probably be prescribed a higher dose strong antibiotics for 2 weeks or even higher dose of IV abs which might be worse (sorry I don't mean to alarm you but that's what I'd be thinking for my daughters).

Your'e so right to be thinking about it now. I take Azithromycin 250mgs on 3 days a week (the dose is 500mg for an actual infection (I was prescribed it over 3 months course when other abs weren't working) although it's more commonly used as prophylactic.

Two useful aspects of Azithromycin - as told me by consultant in 2013 and an excellent GP in 2010: it helps dry mucus and stays in the system hence 3 days a week as prophylactic works so well . I'm going to fish out an Azith 250mg leaflet to see what it says about pregnancy 🤞🤞

[peege in reply to peege]

Leaflet says best to follow advice from doctor. Breast feeding not recommended as they don't have enough information. ××

[girl_DJ_b in reply to peege]

thank you so much for your reply, some really helpful information there! I'll have a look and see. I've heard some good things about Azithromycin but not tried it before but 250g 3 days a week seems manageable I'm going to be armed with some really good questions at my next consultant appointment!

You're totally right about getting an infection mid pregnancy and needing stronger antibiotics- some really good things to think about. Thanks! xx

[MyMystery]

I have read your post and find it interesting. 1- You have had bronchiectasis for a long time, and have only just experienced deterioration. I have had it for 5 years and a CT scan last year showed deterioration with some lung scarring - I was told it was caused by infection , which is why it is important to try to avoid chest infections. 2. - I have been on azithromycin ever since diagnosed. 3. the most interesting thing for me is that you were told you would need IV antibiotics. ever since being diagnosed I had a horrendous cough, so bad at times that when in a store shopping the staff sent a security man to me to see if I needed an ambulance! most embarrasing and if people I met did not know my name I was "the lady with the cough" this is where we get to the interesting bit - 12 months ago I had a chest infection bad enough to hospitalise me and whilst they did tests and got results I was on IV antibiotics, once recovered I waited for the cough to return - it never has in 12 months! I mentioned this to consultant I saw, and did not get an answer - no one will say for sure that it was the IV antibiotics that did the trick - but I feel that it was, but although that infection caused my scar tissue in the lungs, and on paper I should be worse, I am actually much fitter now!

[MyMystery]

Oh, I forgot to mention that, unlike you, I am 80 and I am sorry that you are having these problems so young