Just been diagnosed - scared and v depressed

[northernlass1965]

Hello, just that really. Diagnosed with asthma in childhood, now in late 50s.

I have had lots of chest infections, at least 2 bouts of pneumonia, one of pleurisy, a former non-tb mycobacterium infection (resolved) and have been investigated for cancer recently for the 3rd time over 18 years. I've had my right lung punctured 3 times due to lung biopsy complications.

In adulthood my asthma has generally been very well controlled outside of these incidents and during the pandemic I had great lung health, with no infections. I've never smoked.

So in June this year I felt breathless and had a cough. I went to the gp surgery and over a few months tried repeated courses of antibiotics, which failed to clear my lungs. I saw a different nurse practitioner every time and was just given antibiotics and shooed away. None worked.

Finally I felt better after taking a different antibiotic and I had a few weeks of respite, but now I'm back to square 1, breathless again. I had to insist on a referral to a chest specialist and now I have this diagnosis. It was a shock.

I am now wondering if my condition is the result of being repeatedly fobbed off at the gp surgery with antibiotics that didn't work, thus causing further damage to my lungs.

I don't want to live like this, always struggling to breath, and constantly on my inhalers. I am / try to be/ as physically active as possible and love travelling but I just see the years ahead as being ones of existing rather than living.

Of cancelled holidays and social events due to lung flare ups. I dread the battle ahead trying to get the answers, support and timely treatment I need on the NHS.

Sorry to be negative. I've even read that this condition could mean that I may only have a few years left if my condition deteriorates rapidly...is that right?

I realise there are many people a lot worse off than me and apologies for the mega-moan. Just need to get my head round it.

Thanks for reading.

[Patk1]

Hiya.do ask specialist to refer u to lung physio.a diagnosis,to me is a positive - u.know what yr dealing with + can learn to manage it.there r treatments to help.have u read up on lung clearance techniques- active cycle of breathing.u need to clear the lungs x2 a day to help keep thm clear of infection.also read up on " controlled breathing " & practise so it's effective whn need it.if it proactive in managing yr nbronch,it will help to settle things.do keep active,drink plenty too

[LMEI]

Hi northernlass

Your post made my cry, so I send you a big hug. I am new to the site, although I have been living with bronchiectasis for 10 years.

Yes it is crap but stay positive. Put your music up loud and sod the neighbours.

I do postural drainage twice a day to clear my lungs, even though my consultant told me 'it was old hat'. But it works for me. I had asked if she recommends it to all her other patients, even if it would help one but she wasn't impressed!

Laying on my board and doing the active cycle of breathing clears the lungs. It is relentless all the gunk. I lay there thinking, why am I doing this as it will only be the same tomorrow, but hey ho, it is what it is, as my daughter keeps telling me.

My Consultant is not sure what to do with me.

Just keep getting up when you get knocked down. I always refer to this as a game of snakes and ladders, but there seems to be a lot of snakes!

I keep wondering if I sleep upside down whether that would ease the congestion in the mornings! Oh to be a bat!

Hang in there and take care.

L x

[eleanordigby]

No, you definitely aren’t going to be existing rather than living! And unless you have severe complications, bronchiectasis is something you die with, not of, so if you get under the care of a really good team there’s no reason why you shouldn’t stay stable for a very long time. So, stick to reputable UK websites for information.

Sounds as if you’ve had a right old time of it lung-wise, but until recently you’ve been living a full and active life. It’s interesting you kept infection-free during the pandemic. I think this applied to quite a few of us, ie the social distancing, mask wearing and hand hygiene did us a favour. I’m still doing it!

GPs, and indeed most general respiratory consultants, know very little about bronchiectasis. So the first thing you need to do, if you haven’t already, is get a referral to someone who specialises in bronchiectasis. They’ll confirm the diagnosis, (eg excluding cystic fibrosis is a priority, even for someone your age), refer you to a chest physio so you can learn airway clearance (THE best way of avoiding future lung infections), and depending what their investigations reveal they’ll come up with a plan for your care going forward. (I’d be interested to know which antibiotic improved your condition for a while?)

I’m under the fantastic care of Royal Brompton in London, but there are centres of excellence around the country. I believe there’s one in Leeds for example, and Manchester, and Newcastle. 

As well as airway clearance, exercise is great but I don’t mean sweating away at a gym. A daily walk and some strength exercises are much better, and you must build up slo-o-wly.

You sound understandably depressed, so get treatment for that too, because depression lowers your immunity. You’ll probably get more replies if you post this on the Lung Conditions Community Forum, lots of lovely people there, managing their bronchiectasis well and living good long lives, often decades after diagnosis or even since babyhood. You’ll get lots of support I can promise you that

[Mooka]

you’ve had excellent advice here. To me diagnosis is a positive. You know what it is and how to manage it. There’s people on the lung conditions forum diagnosed as children and still going strong years later. Once you start to manage this and learn how to avoid infections you can live a near normal life. Don’t let this beat you. 🤗🤗

[eleanordigby in reply to Mooka]

You’re so right, mooka - knowledge is power in my book! You’re the same person you were before, northernlass, but having a diagnosis means you can start work on getting this under control.

[medway-lady]

I'm so sorry about your shock but I've had it for 69 years as was born with it and no one knew until a post pneumonia lung measuring function session and a CT scan. This was following an infection acquired on a cruise ship probably the hot tub or bowl of human soup my Respiratory Consultant called it. I did lung gym or Respiratory Improvement course on the NHS about 6 years ago and taught how to huff cough. And the course of antibiotics in the cupboard has remained unopened and still replaced when out of date as never needed since. So firstly it is not a death sentence and life continues as normal lung wise. I'm not short of breath and before I got an AKI I with the CB walked up Snowden. Did Hadrians Wall and the Poseiden Way on Cypress no problem at all. So don't panic and ask about the help available and get on with your life. It might help if you can find out if the infection you have does respond to the antibiotics you have been prescribed as some don't and I've been to Florence, Barcelona, Tunisia, USA and Canada since diagnosis and no problems at all. So in a way I did laugh as your life is definitely not over and it was only discovered a few years ago and in my childhood I never even had any problems it was purely an accident my CB was discovered and I've never given it much more thought. Try not to overthink things and time does help but in no way does it impact in the way you describe, obviously for some it might but as is the case with all health issues it is best to travel with optimism rather than make things worse with stress over things that probably won't happen.

I have the CF gene but turned off hence the CB.

[ZepFan1]

your diagnosis is a blessing believe me! Now at least you know how to look after yourself and taking the right meds etc will give you a new lease of life!

[Janlyn1953]

Hi.How are you doing, I have just read your letter.

Like you I have struggled over the years and I'm still not on the right medication.

I have Bronchiectasis and Aspergillosis allergy.

Plus Allergy Asthma.

I don't ever feel well at the moment and struggle.

I'm on an antifungal drug now called Itraconazole, but having side effects with this.

Regards Janet.

[Aljm]

Hi, I have bronchiectasis and have just bought this book. It is certainly good to read to get ideas and like others have said get a positive approach to managing it.

Book on bronchiectasis

[Amelia2024]

Please go to swim, I know is not the answer you want to hear, but for me your lungs are too use to asma medication, maybe that it why it does not work anymore. They are complety poisoned by chemicals.I have family that they quit asma medication on time after swimming everyday.

Maybe your recover will be slowly but dont loose hope. The thing is that you need to lean to breath without medication, make breathing exercise at home anytime you can, use normal saline nebulization to moisturise your lung that maybe dry of so much medication. Use humidifyer at home.

There is hope for everything dont give up, little by little you can recover. I pray for you.