Diagnosed with Lower lobe bronchiectasis as an 18 year old. Currently infected with pseudomonas. Any tips?

[Warrior4104]

I got bronchiectasis on both lower lobes by a serious pneumonia in childhood. I dont know anything about bronchiectasis and its management. The negative point is that i also got pseudomonas in my lungs and am on Ceftazidime Intravenous along with cipro 750 for 14 days. Will pseudomonas go away ever? I will also appreciate some tips as i am a newbie. Thanks

[MoyB]

Welcome! You'll find several people on here who've had Bronchiectasis for many years.

I also have Bronchiectasis (diagnosed in 2016) and had Pseudomonas diagnosed last year which was treated successfully with Ciprofloxacin. I hope that you will have a good outcome from your treatment.

When Pseudomonas showed up in my sputum culture, the GP I spoke to said I needed no treatment. Lots of people live with it, according to him, and they only treat it if you become symptomatic.

I took this up with the community RESP nurse who got me an appointment with my consultant. He was not surprised at the GP's response but he didn't agree with it either and promptly started me on the antibiotic.

Chest clearance is really important for us people with Bronchiectasis (although my own efforts on this often fall short!) as when the phlegm builds up in the lungs, it provides the ideal breeding ground for other bugs to have a party! If you haven't been told about the Active Cyle of Breathing (ACB) it's worth checking out the information on the Asthma + Lung site and also there are good videos on YouTube (Hospital Physios presenting - not just someone in their living room!) and these will help you to get the right technique.

It sounds as though you've been diagnosed and left to get on with it. Is that correct?

Most people on here would probably say the following:

1.Try and get referred to a Bronch specialist, or at least a Respiratory consultant - GPs knowledge of Bronchiectasis can be sketchy;

2. Ask your GP for a Rescue Pack which should contain antibiotics and steroids for you to take if you have a flare up / exaccerbation. Ask them to explain when you should take them. You will then have the 'equipment' at home to deal with most infections before they become deep seated.

3. Ask if there is a Pulmonary Rehab group locally that you can be referred to. This is a group run by Resp Physios and includes exercises and education. Their aim is to give you the knowledge and understanding to help you stay well and out of hospital. The group I'm currently going to is twice a week for 6 weeks which seems to be the norm. The exercises are tailored to the individual so you only do what you are able to manage. It's not like going to an aerobics class! The group would likely be mixed ability - some people using oxygen perhaps - others sailing through the exercises. Everyone there will have a chronic lung condition but appearances can be deceptive.

4. Find out if you have a BreatheEasy group near you that you can link in to. I am fortunate to belong to one and the information I have gained from it possibly saved my life! I don't wish to over dramatise, but I was given so little useful information from my GP that my condition was deteriorating and all he did was give me more antibiotics. Armed with info from the group, I was able to ask for Pulmonary Rehab (which he told me didn't exist, until I gave him details handwritten by a Physio who came to talk at the group) and I pushed for a referral to a lovely consultant who has helped me no end (and was a bit horrified at the number of infections I'd been treated for before being referred).

5. Make sure you keep hydrated - this helps to make the phlegm looser and easier to shift;

6. Pace yourself! Do what you can manage, and not what you think you SHOULD be doing. It will take you a while to recover from the infection so be kind to yourself. Once recovered, try an keep as active as you are able to, without exhausting yourself.

I'll stop there as I don't know your circumstances or if you work etc, but those are the basics, I think. Anything else, just ask and someone will be able to advise you.

I hope you soon feel better and the antibiotics do the trick.

xx Moy

[Oshgosh in reply to MoyB]

hi,my experience with GP Mirrors mine.

I thought I had an exacerbation of my Sjogrens.

The ILD helpline said send a sputum sample,message from GPsaid I didn’t need any treatment.

As I was struggling I rang helpline again.they arranged for me to have a2 week course of tablets,ended up on it for a month.

It’s no problem,on this occasion,but it makes me wonder why helplines always say ring your GP,it means you have to make even more phone calls.

If you’re feeling rough,I can’t feel up to making more phone calls,leaving messages- explaining yself.

Apologies I’m now descending in to a rant. It’s difficult when I’ve got more than 1 chronic illness,the consultants tell me I’m complex,so how do expect GPto understand and treat me.1 doc said you’re on a lot of tablets,then advised me to ring the hospital.

I’m going to go in the garden and count my blessings.I hope you have a good day.xx

[MoyB in reply to Oshgosh]

Oh dear! My GP told me a few months back that I'm 'complicated and outside of her area of expertise' so to contact the RESP team. It's hard to know what to do for the best sometimes.

I have another issue at the moment and am being sent from pillar to post. Gets me down some days but an hour in the garden or with my head stuck in a book will usually make me feel better.

Hope you perk up soon. Xx

[Oshgosh in reply to MoyB]

so many bells ringing here about out of area of GPS area of expertise.

The ILDteam and Rheumatologist tell me I’m extremely complex,they will admit sometimes that they don’t have the answer.

There also issues around my auto immune conditions ,quite often I don’t know what’s causing what.

Sometimes as a last resort if I can’t get any info/advice,I have a good think and adjust my medication “fingers crossed “

I know it’s not ideal,but what can you do ?

The positive for me is that I started Nintendanib,as to fibrosis drug.

2 weeks now. My mood is not low any more,which is good.

I feel ok,I’m just hoping my liver is ok with it

It’s good to lose your self in a good book,take care xx

[Warrior4104 in reply to MoyB]

Thanks! I got relieved as you said your pseudomonas got treated. I hope I also have a negative culture that will be repeated next week. My Pulmonologist has not advised me any rescue packs, i will definitely ask them for it. I have a question. How often do flare ups occur? My doc told that flare ups mean further damage to your lungs and that you should avoid it. I wonder what if the pseudomonas return back after completing my antibiotic course😭. Sorry if I sound odd but im just worried. Thanks

[Izb1 in reply to MoyB]

A very good reply Moy x

[TomTitTot in reply to MoyB]

I just wanted to say that you’ve given a fantastic answer, par excellence! Nothing quite like the true voice of experience.

Just wish we didn’t always have to be our own experts sometimes, those times when we really are too sick to get on with it, and want to relax into someone else having the knowledge to provide us the best care. I sometimes feel as if I must be catlike, keeping one eye open to make sure that the care I’m receiving doesn’t cause me me further harm.

Best, 🕊

[MoyB in reply to TomTitTot]

Thank you.

We really do have to look out for ourselves these days. I have a family member who still trusts our NHS to do the best for her and her husband. She patiently waits for appointments that aren't sent and when I tell her to phone up you'd think I was asking her to break one of the ten commandments in front of God! She is in awe of the medics despite having been a nurse (or perhaps because she was one).

My husband also seems afraid to phone to check on things or chivvy them up.

But it's more than that, isn't it? We need to keep an eye on the meds we're given and the treatment we're offered (or not offered).

Forewarned is forearmed, they say, and I like to attend an appointment fully prepared so I can accept or refuse what's on offer. 😁

Xx Moy

[Patk1]

hiya and welcome

Self care is key with bronchiectasis.if yr not under a consultsnt,pleSe do ask gp to refer u as theyll give u the advice u need on how to proceed and will refer u to their lung physio.they are s mine of info + will teach u how to clear any mucous from yr lungs.

Do keep active,drink plenty of fluids and try yr best to avoid people with coughs,colds,viral infections if u start with signs of infection,treat as early as poss,with minimum of 14days antibiotics.

Enjoy life and being young.gd to have u here.dont be put off by us older people,who didnt have access to the info now available on bronchiectasis xxxxx

[Warrior4104 in reply to Patk1]

Thanks! I will try my best to manage.

[Hidden]

The answer to your question about pseudomonas is that once it is in your lungs it lurks. Even when there are not enough numbers to show up on a plate ( and these tests are notoriously unreliable). This is why self management by emptying the lungs of the warm wet mucus that the bacteria grow in is very important. This helps to keep the pseudo numbers down. Then you will only need antibiotic treatment when they have a party and make you unwell. The treatment that you say you are having is spot on for a pseudomonas flare up. Although sometimes you may only need the ciproxen on some occasions.

You have been advised that your rescue pack should contain steroids but this is not correct. They are not recommended in the guidelines for bronchiectasis unless the patient has asthma or copd alongside it. Unfortunately most GPs know nothing about bronch and tend to treat it like copd.

You have had some very good advice on daily management from other members.

[Warrior4104 in reply to Hidden]

I have bronchial asthma along bronchiectasis. I am really worried about pseudomonas. I wish there comes a way to get rid of this bug. My doc has advised me steroids along with antibiotic treatment

[Hidden in reply to Warrior4104]

yes your asthma indicates that you would need steroids alongside antibiotics. Don't get worked up over the pseudomonas. I have lived with it since 1986 and lead a very full life. There are lots of people on this forum who live with it too. It's a combination of scrupulous lung clearance and the right antibiotic treatment which keeps it in its place.

[Monawhite1 in reply to Hidden]

Hi Littlepom I have been following your Bronchiectasis posts with interest as you are very well informed and like yourself I have had to learn lots of this for myself. My surgery are hopeless but I did get to see a Respiratory Nurse by keeping on to the Doctor. She is lovely but rings me twice a year! I have diagnosed myself with the Bronchiectasis and finally got her to agree that is what I have got because I got so many chest infections. I am on Azithromycin which I take October to March and I have found very good. I am however having a flare up now of my Bronchiectasis and hate taking the steroids. I hang on until the last as they affect me badly mentally and I do not sleep. Whatever time of day or night I take them . It was with interest that I have read here that they are not necessary for Bronchiectasis flare ups! I do have COPD though as well so thought I might get away with not taking them! Thank you for all your info Littlepom so much more informative than my Health Centre!

[Hidden in reply to Monawhite1]

hello Monawhite. I am concerned that you say that you have diagnosed yourself with bronchiectasis. It is impossible to diagnose bronch without a ct scan and a bronch specialist is really needed for this. You seem to be being treated or your copd. That's what the steroids are for and many people wih copd find azith useful in keeping down inflammation and infections. Respiratory nurses and GPs know next to nothing about bronch. If you think that you have bronch find the name of a bronch specialist, usually at big teaching hospitals. Take the name to your GP and insist on a referral. Then you should get a proper diagnosis and know what you are dealing with. Good luck

[MoyB]

Littlepom is a well respected member of this forum who gives sound advice!

Regarding your question to me about how often flare ups occur, I am still getting up to three a year. Some of the reason for this is that the antibiotic (Azithromycin) that is taken three times a week throughout the year has not been available to me because of its possible side effects. Instead, I take Doxycycline from November to April (have to stop regular use when the sun starts shining as it can cause you to burn more easily) and I usually start getting my first infection in May! My consultant is due to speak with the cardiology team as I've had a catheter ablation to correct or improve my irregular heartbeat and if they are happy for me to have the Azithromycin, he will prescribe it for me.

Everyone is different and, with good management (and no other condition causing a problem with meds) many people avoid flareups for long periods of time.

I'm not sure from your post heading if you mean that you ARE 18, or were diagnosed some time ago when you were that age. If you are 18, you'll no doubt be attending college or working and the advice to stay away from people with colds and flu is hard to manage, especially if you have to use public transport. As so many people are still prefering to wear a mask to avoid COVID, I would suggest you consider keeping one handy to pop on if you find yourself in a situation of risk.

xx Moy

[Warrior4104 in reply to MoyB]

yes true! It is really hard for me to avoid people as i have to attend college. I am considering to wear a mask outdoors all time. Thanks for your kind words and advises

[MoyB in reply to Warrior4104]

I hope you soon get the pseudomonas down to a level that doesn't cause you any problems so that you can get on with your life again. All the best. Xx Moy

[PAP48]

I have had bronchiectasis and asthma since a child, I'm now 74 and living a very active life. To help combat pseudomonas I take azithromycin 3 times a week and am using colomycin through a nebuliser. As previous replies, the main thing is to clear your lungs as thoroughly as you can and as many times a day as you can. There are various devices to help with this, I'm currently using an Aerobika which I find the best because it can be used in any position, laying down or upright. Pulmonary rehab is fantastic, such a wealth of knowledge and the exercises help enormously. As previously stated, they are tailored for each individual patient, and you are monitored at every step to make sure everything is OK. Hope this helps.

[Warrior4104 in reply to PAP48]

Its really motivating that leading a normal life is possible with bronchiectasis and asthma. Thanks!

[Izb1]

Hi Sufferer197104 and welcome to the site, you have been given good advice above and cant add anything to this x

[Lutontown]

I contracted bi-basal bronchiectasis in 2014 after, and as a result of a March to November run of a chest infection of Staphyloccus Aureus (check the spelling). I blame my surgery for not sending me to the specialist earlier. The bug was got rid off with IV antibiotic, where the oral one was not man enough. The bronchiectasis was shown up on a CT scan. However, after a few years of many chest infections (18 in 2017), the eradication of black mould in our bathroom in March 2018, I now have no flare ups at all. I'm also on medication, of which I think Spiolo Respimat is probably the most important. I also sleep with my trunk fairly upright. I sleep in an adjustable bed. So, overall not too bad at all.

[Phill1]

I agree with all of the above sound advice.. And definitely think you should ask about starting on Azithromycin...

[Warrior4104 in reply to Phill1]

Sure! I’ll ask my doc about that. Thanks

[Reading4everyone]

Hi Sufferer 197104. Sorry to hear you have bronchiectasis at such a young age. I’ve had the same disease since babyhood and am now almost 76. I have also had peudomonous from time to time. My main advice to you is to keep as active as you can within your limitations. Ask if there is a pulmonary rehab class in your area once you are in the recovery stage of your present infection. The second suggestion is to do your chest clearance at least once daily. The third recommendation is to find a breathe easy group. Talking to fellow sufferers and picking up useful tips is such a support. Hope this helps for a start. I could go on but I don’t want to overload you at this stage. Feel free to ask any questions on this sight. There are many wise people here. Best wishes Marlbee.

[Warrior4104 in reply to Reading4everyone]

All of the members here are so much supportive. I remember two weeks ago when I was diagnosed, i felt like the world ahead of me is just finished. Reading the information about bronchiectasis on google made me believed that it has only a time of 5 years after that mortality. And when I came here, reading about stories of different people who have lived their whole life with it, and lead a fuller life, I came back to the world. The whole anxiety I faced just vanished.

Now I have a hope that I will live my life normally but with some managements and setup. Now I see that with proper care, I can achieve the goals I have always dreamt of.

You all are very much caring and kind. Thanks to all of you for that. I hope that we all get better and stay infection free.

Sufferer197104

[Hidden in reply to Warrior4104]

of course you will achieve your goals. I have travelled and lived all over the world, had and raised 2 children, had many occupations, ran my own company, went back to uni in my 40s. Did degree and MA. Now 72 and a guide where Shakespeare went to school. When I was six docs told my mother that I wouldn't survive my next pneumonia! You live with bronch, not suffer from it. You manage it. Bronch does not control you. The world's your oyster. Go for it!

[GintyFerguson]

nihr.ac.uk/documents/2229-p...

I read that article with interest. I have had asthma and bronchiectasis for many years. I don't rely on the non research pages on the internet. I had pseudomonas about 12 years ago and hit it hard with two weeks of cipro. It has never shown up again. Touch wood! There are some helpful experiences on offer here but do remember everyone is very different. I don't take oral steroids for asthma unless my peak flow slides down . I'm on two different inhalers which are controlling things just now. Fostair and Incruse. I also take various supplements. It is so important to look after your general health as far as possible and try to stay positive. I find my mind is my best ally! Good luck .

[Warrior4104]

I wish mine also go away as I am also on cipro 750 but ceftazidime too. Well, how do you come to know if the infection is getting better? Like I have 2 days left to complete the antibiotic treatment, my sputum is white and sometimes transparent. Does this mean its gone?

[Hidden in reply to Warrior4104]

it is never going to go. The numbers have to be kept down to levels you can live a normal life with. Your sputum sounds v good atm. Just keep getting it out. Concentrate on how o feel and don't get fixated on lab results.