Anyone living with severe bronchiectasis?

[Aleksandra1990]

Is there anyone out there with severe bronchiectasis? My mother has this condition and has done since 2013 I want to know what the outlook is because her respiratory team have been awful and have written her off a long time ago, she’s been given no support whatsoever. I am struggling to live my life constantly worrying about my mum. The only people I come across have this disease very mildly.

[Carkaisabellacolin]

Hi there

Aleksandra

I have severe broncho and its become worse in the last 2 or 3 years

I am only 43 yrs but its very difficult .

I realise that management is important andhaving a good Dr is necessary.

I live in Cyprus and i have good Drs and excellent physio.

But my condition has worsened due to not responding to meds so infections come more frequent and hospital visits.

I think mentally its very tiring and can get you down.

Its not easy seeing the family around you watching you go through the pain and feeling helpless.

You really need to try and get support for your mum as broncho gets worse not better.

You all need the support.

Wishing you all the best

😘

[Hidden]

Hello Aleksandra. There are quite a few of us on this forum who have what you call severe bronchiectasis and several of us who have had it extensively all of our lives. I am 70 and was diagnosed at 3 years old. With good self management and proper treatment when needed I have led a very full life and still do.

If your Mum was diagnosed in 2013 and has it extensively she was probably struggling with it for years before but it wasn't recognised. It doesn't develop overnight but is the result of attacks on the lungs by multiple infections, pneumonia or an immune condition such as rheumatoid arthritis.

Unfortunately, like many bronch patients she is the victim of ignorance and complaicency about the condition on the part of GPs and many general respiratory consultants. They push it to one side, belittle or ignore the patient's needs or treat it like copd because they do not have the training or experience in what is a very complex and demanding condition.

To be diagnosed, your Mother must have had a ct scan. Now she needs to be under the care of a bronchiectasis specialist who will tell the GP which drugs to give her, dosages and length of course and delivery system. Oral, nebulised or IV when needed.

She also needs to engage in rigorous self management. This includes breathing exercises, keeping active and most importantly, emptying her lungs in a daily routine, of the mucus which sits in the lungs and airways and in which the bacteria which make us ill breed. A bronch specialist will have physiotherapists who can teach her tecniques to do this.

Bronch specialists are usually at large teaching hospital. Look for one close to you. Give their secretary a call, explaining the situation and flagging up that you wish her to be referred and will ask your GP to do so. Then take the name of the specialist to the GP and insist on a referral. Do Not Take No.For An Answer and let them know that you have already spoken to their secretary.

It is very important that your Mother gets on to.proper management and treatment asap. If they try to refuse a referral but are not succeeding in meeting her needs (as they obvioysly aren't) they are failing in their duty of care towards her. So instead of just worrying you have something to do to.make her life better than it is now.

We bronchs really do have to be very proactive and vociferous in sourcing the right treatment.

Good luck. Your Mum us lucky to have you.

[Alberta56 in reply to Hidden]

Hi Littlepom, My bronchi is not nearly as bad as Aleksandra's mum, but your advice is so sound, that I shall do my best to follow it. The bit about being proactive rang a big bell. I had to deal with a rubbish surgery for several years and my condition deteriorated accordingly. Of course it is hard to shout and scream when you feel awful. I hope Aleksandra will have the energy to do it for her mum.

Best wishes, Aleksandra. I'm glad your mum has you to care about her and that you will manage to get something done.xx

[Hidden in reply to Alberta56]

Hi Alberta, you hit the nail on the head. Dealing with obstructive idiots when you are poorly and worn out is terrible and should be unnecessary. This is why we all need good bronch consultants to make it clear what needs to be put in place for us, such as our rescue abs, which my GP keep topped up. If I feel that my cipro isn’t coping I ring my consultant’s secretary and now she has a bronch nurse on her team. There is a discussion and a decision made on ongoing treatment. They also have an arrangement with my local hospital for me to have home IVs. Not needed yet 🤞🏻This avoids me having to rely on the GP and mine are very happy to go along with that as they do admit that they are out of their depth with bronch and appreciate the specialist’s advice. We should all have this in place and it is my crusade to get every bronch under the care of a good bronch specialist so that we can all live the best life possible.

We do need to support each other and I’m sure that C will find yours a comfort.

Do stay well. X

[Hidden in reply to Hidden]

Aleksandra not C. I do get mixed up 😖

[Alberta56 in reply to Hidden]

Keep on crusading, Littlepom. It revives me just to read you.❤❤

[CYMROBOY in reply to Hidden]

Bravo Littlepom. You have said it all. Like you I am a lifelong Bronchi. Diagnosed at 10 years (result of damage from Measels or perhaps Whooping Cough) Investigated over 4 years (1948-1953) at a top Hospital (Morriston, Swansea). Had surgery contemplated by the King's Thoracic Surgeon (Miles Thomas, who had limited sessions at Morriston). They must have thought better of it and at the age of 14 I was told to get on with life ! I did so and I am now 82. Over the years I have had relatively good GPs but found self management (albeit with the blessing of antibiotics when required) to be more effective. Unfortunately, now in retirement in west Wales I have a dismissive Surgery when it comes to Bronchi (would not place me on the 'shielding list') I do have a Consultant seen for the first and only time last February. How good he is or whether he has any particular expertise in Bronchi I have no clue. Is there a case for BLF being more proactive on our behalf ? Perhaps the are. Would it be possible for them to produce a list of Consultants with a special interest in the condition ?

Keep well and keep fighting the good fight.

[Hidden in reply to CYMROBOY]

It’s lovely to hear from you and that you have got yourself so far in life, mainly by your own efforts. I’m afraid that good as they are in many ways, BLF have shown little to no action or enthusiasm to campaign for bronchiectasis and the discrimination that we suffer in regard to medic training, drugs and services compared to other lung conditions.

Did you check your consultant out. If they have a specialism in bronch it is usually on their profile. If it isn’t, it signals that they are general respiratory consultants. Having acted as a patient for medics from first year students to consultant applicants I can attest to the woeful training in bronch all along. At the consultant level there were only about two in ten who could tell that I had bronch as opposed to copd and less than half of those stated the correct treatment.

A bronch specialist needs experience of working with many bronch patients who have a complex and individualistic condition. Obviously, at many respiratory clinics this isn’t possible because most patients have copd or asthma. So it is up to us to seek out our saviours.

Good luck, onwards and upwards.

[Lfcpremier]

Oh this is so hard for you & your Mum! I was diagnosed at 55 after repeated infections & widespread pneumonia. If you say which area you live in people may suggest a good bronchiectasis specialist for you to ask for a referral to.

Wish you & your Mum all the best.

Linda💕

[Aleksandra1990]

Hi everyone, thank you so much for all of you taking the time to write back to me.

I forgot to mention that my mum had also been on home oxygen and NIV machine at night since 2014, she’s usually on 2 litres for a minimum of 16 hours per day although she’s in hospital at the moment and they have turned her down to 1.5 litres after discovering she is retaining oxygen. So are any of you also on home oxygen? Little Pom your reply was very interesting, my mum does also have rheumatoid arthritis and was diagnosed when she was 40 although it’s was very aggressive in the beginning leaving her hands and feet severely deformed she rarely has any pain from her rheumatoid now. So back in March of this year my mum was hospitalised with flu which was a massive worry as it was right at the start of the first Covid cases in our hospital (Norfolk and Norwich university hospital, Norfolk, England) luckily her consultant agreed to let her home after a couple of days to finish treatment, my mum is a retired nurse so is able to do home IV’s etc... she can no longer take oral antibiotics as they just do not work so it’s always IV’s. Since then and all throughout the summer she was much more breathless but no one could tell her why, xrays and sputums were all clear, it went from bad to worse then she lost a lot of weight as was feeling so full very quickly when she would eat so we started pushing for a CT scan but they kept telling her she didn’t need one. Then one day she said her breathing became so bad and she couldn’t control it so for the first time in her life she dialled 999 she spent most of the day in resus and was rushed for an emergency CT scan where they found her lungs were full of mucus plugs! She was essentially drowning in her own mucus! Things were very much touch and go for a while... they gave her meds to loosen up all the mucus and thankfully after a couple of weeks she was able to come home. Since Covid I take a weekly sputum to be analysed as a precautionary measure and a week after she was home she was told she now had acinetobacter baumannii which is a bacteria frequently contracted in hospital! My mum was told as long as she felt ok then to not worry as it’s an “opportunistic bacteria” then a few days later last week I woke with a call from my mum telling me she was on her way to hospital again after coughing up a colossal amount of blood, at first we thought it might me a burst blood vessel but the new CT showed no signs of this so they believe it was down to solely the bacteria which of course has led to infection! So she’s now on IVs in hospital again. Also at the start of the pandemic they were putting my mum on Covid wards and with other suspected cases and I went crazy and said she’s extremely vulnerable and they kept saying but she had shortness of breath which is a main symptom of Covid and I said of course she does because she has a long term chronic lung disease! How awful is that! As a family I feel we have been completely terrorised by all of this in particular this year! I also had a baby a few weeks ago so it’s been so tough. One of the other things the doctor said to me was that I should be thankful my mum has lasted this long because many people who start home oxygen and NIV machine don’t survive this long... this really hit me. So I was also hoping to come across anyone that’s also on oxygen and has been on it for some time. My mum is considering being put under papworth in London as they supposedly have an excellent respiratory team.

[TwoDrifters]

Presumably regular azithromycin has been prescribed. If not pursue this option it is very successful

[skipwork]

I have severe brochiectasis for years. I do three fairly lengthy sessions of postural drainage on the bed with my head lower every single day (ask a physio for the correct procedure).

I use a nebulizer each time, preceded by spaced out Carbocisteine tablets to loosen the mucus. When I do my drainage I use an Aerobika mucus clearance device,

Take all these steps and one can cope. See your doctor and physio.

Let us know how your mum gets on please.

All the best. Cliff Kent.

[Aleksandra1990 in reply to skipwork]

Hi skipwork thank you for taking the time to reply, are you also on home oxygen? I’m so worried because my mum is currently in hospital following a massive bleed last week, they gave her meds to stop the bleed and the CT scan showed no obvious cause so put it down to the infection but then today she’s told me she has specks of blood in her sputum again so now I’m panicking it’s basically a ruptured artery and another big bleed is coming! Honestly worrying about her consumes me so so much. Mum also does this physio you have described since the mucous plugs and uses a device which I presume is the same one you have.

[skipwork in reply to Aleksandra1990]

To Aleksandra1990. No, I'm not on Oxygen.

[Aleksandra1990 in reply to skipwork]

Hi skipwork that’s really good you are managing without. My mums oxygen levels go far too low without it, her target sats are 88-92%

[Patk1 in reply to Aleksandra1990]

Dont worry bout specks - q common in bronchiectasis.u sound very anxious.perhaps u should see dr 4yrself re anxiety.it may help.mum has to live with her conditions,as we all do.you have to support her but you have to live yr own life too xx

[Aleksandra1990 in reply to Patk1]

Hi Patk1 thank you for your reply. Yes I am very anxious because my mum and I are as close as it gets and she is a huge part of my life. I have now invested in speaking to a professional to help me cope rather than seeing a GP who will no doubt just try to fob me off with medication which is not the answer. It’s really helping to read other people’s story’s on this forum and know that my mum is not alone because for so long the only other people we have come across with bronchiectasis when she’s in hospital don’t have it anywhere near as bad as my mum does. It’s really reassuring to know that others experience the blood too, this is a new symptom for my mum so very daunting as at first it was a massive amount that just kept coming and coming.

[Patk1 in reply to Aleksandra1990]

Gd,im glad your going to get help for you.try mindsmatter - itz confidential and v gd.

The best thing prob u can do is encourage mum to clear mucous frm lungs at least x2 a day.personally,i get it up every cpl of hours.mucous with bronchiectasis,is a real burden. But its got to be dealt with - its tiring,and not easy but its so important to get it up,to try to reduce infection.infection & inflammation cause more damage.the streaky bits of blood in mucous isnt usually of concern.but mum shld get help if needs it.she could ask for lung physio whilst in hospital - they are experts in teaching lung clearance of mucous,etc.u take care xx

[Blue58]

Hi Aleksandra

I've had bronchiectasis for a number of years now. I am also on 4ltr home oxygen 16 hours a day. I would echo what others have said. Having been under a Bronchiectasis specialist for many years my condition was well managed but unfortunately he left our local hospital and he hasn't been replaced. Since being under a general respiratory I have definitely deteriorated and I am therefore seriously considering moving to be closer to an expert as it really does make a difference. My GP is good but will openly admit they do not have the expertise. Your mum will get to know what works for her and what doesn't and sometimes it can be problematic when you are trying to explain this and it is usually in these situations when it really does show the difference between a specialist and general respiratory consultant. Ask your GP if there are any specialists in your area. Specialist nurses are also a godsend as many general nurses will tell you it is better for your chest to be sat upright whereas a Respiratory Professor once told me that postural drainage is far more important because when you are sat upright gravity is pulling mucus to the base of your lungs where you do not want it to sit which has been echoed by a number of specialist respiratory nurses and physios that I have met along the years.

[Aleksandra1990 in reply to Blue58]

Hi Blue58 thank you for taking the time to reply. May I ask how long you’ve been on the oxygen for? The consultant told me a few weeks ago how well my mum is doing because she’s been on the oxygen and NIV for 6 years now and her words were “most people don’t survive this long” such a shame because the consultant she’s under is allegedly a bronchiectasis specialist but he’s been absolutely awful and so dismissive of her hence why we started researching specialists in the country and found that Papworth is supposed to have an excellent team. The other big worry at the moment is this situation with the bleeding, she had never experienced this before until last week and they gave her meds to stop the blood but today she’s so worried as has coughed some up again and there are streaks in the sputum so she’s so scared she’s going to have a massive bleed again like last week. They told her it’s common for bronchiectasis patients to cough up blood but again I’ve not come across any that have had this? It’s all just so exhausting, you are all truly so inspirational going through what you do and it’s such a poorly recognised condition.

[Blue58]

Hi Aleksandra

I first took ill in the mid 90's and have been on oxygen practically ever since although I would say that I have been on oxygen 24 hours a day over the last 4 years but I firmly believe that's because my condition has not been controlled properly since the departure of the bronchiectasis specialist at our local hospital. Finding a Consultant who truly understands the condition is very hit and miss I've found over the years. I'm too poorly to travel too far these days but I have seen real experts in London and Birmingham and been astounded by their knowledge. That may not have done me any favours though when you meet those that are dismissive because I know what I've learnt from previous experts. I have had streaks of blood that I have coughed up before when I have had a severe chest infection. Years of experience has taught me that I can now recognise when I am starting with a chest infection and that is long before any infection shows in blood tests and if you can find someone that will intervene and treat you before the infection really takes hold then I believe we would all be able to manage our condition better but as I am beginning to realise, without positive test results today some Doctors will not step outside the ring so to speak and start treatment and that is what can make it difficult sometimes because most of us will be able to recognise when there is an infection brewing. You do have to battle hard sometimes just to be heard which is the last thing you want to do when you are feeling poorly but if your mum is able to travel I would definitely speak to her GP about the possibility of being referred to a more specialised hospital if only for a second opinion. That's what I did and the experts in Birmingham turned my life around as my previous hospital were willing to work under their instructions but of course I moved house and I no longer have that facility and I am too poorly to travel anymore. I wish your mum well and I would say keep fighting and keep searching out those experts especially if you are not happy with the care she is receiving at the moment. I've not had any experience of Papworth but The Royal Brompton in London and Heartlands in Birmingham were excellent.

[skipwork]

To Alexandra1990.

I have severe brochiectasis and do my regular 3 long sessions of lung clearances each time.

In the evening I am sitting in the chair and am ok, but when I go to bed I have very bad coughing bouts which go on for 10 minutes.

Why is this? Any guidance that you can give would help.

Should I take a puff of my inhaler before getting into bed?

My inhaler is an Atrovert CFC-Free 20 micrograms.

From Cliff.

[Ramy22]

Bronchiectasis calmed down with a nebulizer and antibiotics three times a week. From nasty to practically non-existent! Has your mum got these?