I’ve had non stop exacerbations for my Bronchiecstasis since October 2023. I’ve been given various oral antibiotics, various IV antibiotics and 2 hospital stays. I perk up on the IV antibiotics but the second any antibiotic ends after 2 weeks, I relapse.
I do everything the consultants tell me to (daily clearance, meetings with physio, daily nebulisers, daily inhalers) even though sometimes it’s gone against my own wishes as I’m 27 weeks pregnant and can’t ever be sure on the effect on the baby.
I am under the care of what I believe is one of the best consultants in my area of Birmingham at the QE but I’ve lost trust in them. I feel like they have no idea what to do with me next and I’m constantly having to chase to speak to them, get an appointment and tell them I’ve relapsed yet again.
I’m starting therapy for anxiety and depression in the new year because being continually unwell is having an AWFUL effect on my mental health. I’m not sure where to go from here so any advice I’m open to.
Thank you all xxx
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I should add that as soon as the treatment dose has ended, I’ve been on a prophylactic but neither of them have worked so far. The first was co-amoxiclav (thought to be a safer option in my first 2 trimesters) then I’ve just started on Aziththromycin but relapsed anyway
I’m with a consultant at the QE too, and have been on Azithromycin for about 8 years. Only one exacerbation in that time, and that was right at the beginning when the lung man said people don’t get chest infections in the summer so take a break from May to September. I got the worst infection I’d ever had, and was hospitalised.
Congratulations on your pregnancy! I wouldn’t worry about the drugs, I took antibiotics and prednisone throughout my pregnancy & all was fine. The consultant pointed out it was much worse for the baby for me to have an untreated illness, and would put a strain on my heart too.
It sounds as if you’re colonised with a bacteria. It backs off whilst you’re on IVs but is never really eradicated. Do you know which bacteria shows up in your sputum? Like many with Bronchiectasis, I’m colonized with pseudomonas aeruginosa. I nebulise colomycin twice daily & on the whole it works a treat to keep the numbers down. I do get occasional flare-ups but I’m very careful about airway clearance & on the whole things are ok, even though I’ve got rubbish lungs.
I’m sorry you’ve lost confidence in your team, that’s a great pity.
Yes pseudomonas a couple of times and Haemophilus influenzae which has been the trickiest to shift. I just don’t know what’s next for me, I feel like I’ve tried everything! Thank you for your comment xxx
Goodness me, I really feel for you with constant exacerbations, constant treatment regimes and being pregnant as well.
Can I suggest that when the Asthma + Lung Uk helplines reopen in the new year that you give them a call. The specialist respiratory nurses are very knowledgeable and helpful. They will give you all the time you need.
Thank you, yes I’ve called them before when my mental health was at rock bottom. They are reassuring however as they don’t have access to my medical records and my specific details it’s hard to get full reassurance and at the moment can’t seem to get an appointment with my consultant!! But yes will definitely try them again, thank you xx
So sorry you're so ill, especially when pregnancy should be an enjoyable, looking forward sort of time. Jane Divney's post is reassuring. I hope things get better soon, though it sounds as if you are doing everything right. I just hope the germs will give in at last. Very best wishes. xxx
O duk I've been there, I've got a condition called COP, a type of pneumonia. I wonder if you need to be on antibiotics for longer to kill that infection. I was on for antibiotics for 3 months at got rid of the bacteria in my lung xx
I was colonised with haemophilus influenza and has pseudomonas, pseudomonas cleared up but haemophilus took 4 months of co amoxiclav and doxycyline ,had no infection for over 18 months good luck xx
Its a grind for sure. If it were me this is what I would do but don't know about doing that whilst pregnant. Stay well hydrated, avoid dairy products, take Vit D, zinc and Vit C plus fish oil. Get exercise. Avoid decomposing organic matter esp cut flowers, avoid getting close to other peoples under 5s. Try a salt pipe to clear the mucus. It's key to keep getting the mucus up and out. I went through a phase like this whilst working and I reckon it was because I kept picking up bugs from the other 99 people in the office. Good luck !
Thank you for your comment! Thankfully I work from home so don’t have to deal with lots of other germs, although we do have a 4 year old who thankfully has a very good immune system but does bring things home occasionally from school. Im definitely on top of chest clearance but I think that’s why it’s so disheartening because I’m doing everything “right” or what I’ve been told to anyway and am still poorly xx
Make sure there is no mould in your home. We got rid of Black Mould in our bathroom in April 2018, and no chest infections since then, other than a bout of Pneumonia and Pleurisy I had in Nov 2019. I believe the mould was in our home since we bought it in Aug 2013, as I had numerous chest infections whilst living here. Mould may have been present in our previous house, as I had a lot of infections in 2012, and the lady of the family who bought that house, died of a fungal lung infection. Worth a look. Mould can form anywhere there is water leaking. Roof, kitchen and bathroom. The latter two, the mould tends to hide away, under and behind, out of sight.
Gosh that’s awful for you. I was ill from near the beginning to the end of my 3rd pregnancy. I was told it was the 9 month cough or something like that and it did stop the minute my little one was born. I had antibiotics throughout but it persisted it did get to Me and exhausted me. At the time I was unaware of having respiratory disease which was diagnosed years later but I’d had since being 4 or 5
I hope you keep as well as can be Chat to your consultant or gp Have you tried listening to meditation tapes ? 🤗
Yes had a chat with my midwife and GP and I’m starting CBT therapy in the new year which will include some tools on how to help me to manage my mental health better. It’s been a downward decline to be honest but help is coming hopefully 🤞
Cbt is very good.youll reap the benefits if u put the work in.i did it to help mainly whn on steroid courses for extended periods and it's bèn v helpful xx
I you do not mention what drugs you are on but have you tried Carbocisteine? It has been a game changer for me I was getting bad chests on a regular basis pneumonia and pleurisy were not uncommon. I now take 2 3 times a day. Worth asking the GP/Specialist?
Yes I’ve been on carbocisteine in the past but unfortunately it’s not one you can take during pregnancy until I believe you’re in the 3rd trimester which I’ve just moved into so I can start back on those again soon
Some people take nacys - (n- acetaline) I don't know if u can take when pregnant,or not.have u been given a flutter device eg aerobika,to help with lung clearance x
I'm sorry you're having a rough time. As I understand it, pseudomonas takes months of continuous treatment to hopefully eradicate. I too have haemophilus which is now colonised so I always have it to one degree or another. They prescribe Doxycycline which knocks it back for a while. Are you on hypertonic saline? I am waiting for a chest physio appointment and they are suggesting I need to start this.
I hope you get some answers. It's exhausting I know and must be very difficult through a pregnancy too.
Thank you for your comment, I’m on 0.9% saline nebules, is that the same thing? It’s really hard through pregnancy and as this will be our last baby, I really just wanted to enjoy it but sadly not the case as I’ve been so unwell xx
0.9 is very low. I think 3% and 7% are more effective but maybe it's because of your baby. Perhaps you could ask about it next time you see someone? I do hope you can get some more advice on what you can do to help things get better for you. It must be a worry for you and I remember being extra emotional when I was pregnant too. I think ringing the nurses here will be a great help.
I’m so sorry to hear you’re going through this. I’ve been there with the constant infections and it’s awful. Once they found the pseudomonas I had two weeks of two antibiotics and then went onto nebulised colomycin to keep the numbers down. Pseudomonas likes to lurk in the corners of our lungs and come out to play once the antibiotics have gone away. If colomycin doesn’t work there are different antibiotics they can try. I hope you find something that works for you soon so you can enjoy your baby when he/she comes along.
- Have you considered avoiding airborne infections by wearing a respirator (FFP3 mask) when you are out and about in shops, at work or on public transport and when meeting friends and family indoors?
- Have you considered running a HEPA filter at home and at work to clean the air?
- How is the air quality in your house? Is it well ventilated? Have you considered using a CO2 monitor to measure indoor air quality in your home and at work?
These are the things that we all do in my household to avoid exacerbations, alongside washing our hands.
Hello yes I’m all up to date with vaccines (they usually give them at 28 weeks so I’ll have them next week) and the only one I haven’t had is the flu vaccine as unfortunately they won’t administer it while I have an infection. I’ve had 3 appointments booked to have it done but they won’t let me have it! I also wear a mask yes. Will look into the HEPA filter, thank you
In addition to taking meds: Reduce stress, check the air quality where you live (do you live with a smoker), check for mold in your house, are you allergic to cats, dogs, etc.
It can be a minor change that can make a big difference. Ex: I bought new bed pillows, I started coughing at night, the pillows were stuffed with goose down. I changed pillows and the coughing stopped.
I have no friends or family who smoke at all, I’m not around smoke at all including partner. No mould in house & my partner has loads of allergies so we have zero pets and dust is kept to a minimum. I could try to change pillows! Thanks for commenting xxx
Hi .Has the Haemophilus influenzae raised its head again ? .It can be ongoing and really hard to clear .Some people have an abnormal result of antibodies against the bacteria ,in which case a vaccination can be given to try and boost those antibodies .Worth a discussion with your team .Wishing you the very best .
Before my IVs started at the start of December, my sputum sample grew pseudomonas, no mention of haemophilus this time. Since the treatment has ended and I’ve relapsed I’ve not been able to get another sputum sample over to the hospital yet (I’m slightly out of area so can’t take it to my GP). I’m due an appointment early January but still not had a date yet so will find out soon once I drop another sample in. Thanks for commenting xx
Oh goodness .Pseudo is another horrid bug .Some people have Nebulised Colomycin or Gentamicin…You may just need a course of different antibiotics .Im sure they will get on top of it.Hope you can get that sample tested soon .Lots of options for treatment .Let us know how things go xx
That’s the problem, I’ve been on so many different types and nothing seems to work. I always relapse after the course has ended even though I’m moving onto a prophylactic At the moment, I’m 7 months pregnant so they are very limited with what antibiotics they can give me anyway. But I’ve heard about nebulised colomycin so I’ve definitely got some info I can ask consultant at my next appointment. Can’t thank this group enough, it can be very lonely when you can’t fully explain to friends and family what it’s like xx
By now I expect you are suffering with chronic stress too…Which is totally understandable. I have bronchiectasis but try not to give up…I very rarely suffer now..and I sincerely hope it will be the same for you.
For some time I was very ill…particularly with the Haemophilus influenzae bacteria and others.
Do you have a dog? The reason I ask, is that my consultant wondered why I kept getting unusual infections and asked me if I kiss the dog! If you have a dog and kiss it…stop now!
carbocisteine pills help loosen the phlegm so I can cough phelgm out.
You should hopefully have an emergency supply of antibiotics at home in case of need. 🙏
Breathing exercises and an Australian breathing device…Airphysio. Not a drug…you blow into it and try to make the ball bearing bounce up and down..helps clear the lungs.
I am on nebulised colomycin, but it does say not to be used around pregnant women. The 2 pregnant nurses stayed well away from me while I was nebulising in hospital. So doesn't sound like that's something you should take at the moment.
I'm so sorry you feel so bad , especially at an exciting time of being pregnant with your baby , congratulations !
It might help you worry less knowing I was on antibiotics all through my pregnancy, another thing I worried about was my constant coughing fit's, worried it would effect my baby . That was 35 yrs ago and my daughter has perfect health, and now has a daughter who's no health problems also to my relief . I always worried they would end up with this dreadful illness .
What you said about two weeks after stopping IV antibiotics, the infection starts up again , that was me too .
I now have been on inhaled Colomycin for over a year which seems to be really helping keep the Pseudomonas levels down . It can be time consuming but worth it if it helps .
I find doing breathing exercises helps when I feel anxious.
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so will find out soon once I drop another sample in. Thanks for commenting xx
GP and information
cursed Pseudomonas again
Will this chest infection ever go?
