Confused?

[Aitchic1]

Hi,

I'm a 46yr old male.When I was around 30 I was told I had asthma.I had been a light smoker and stopped immediately.Privately i questioned the diagnosis,not that I was disrespecting the experts but found it bizarre being so fit and healthy,to all of a sudden having asthma.As the years have passed I've been diagnosed with Rheumatoid Arthritis which appears controlled by sulfasalazine.In this day and age we can find out lots of info(good and bad)online and found out Rheumatoid Arthritis can affect lung function.Within the last year I've become breathless with the slightest of activities and even a few flights of stairs has me wheezing.I produce lots of sputum and after having chest X-rays and a consultation with a respiratory expert I've been diagnosed with Bronchiectasis(didn't know such a thing existed).Obviously I do now but i'm still confused how rapidly my breathing has went down hill.Ive been on the usual Ventolin,serotide,currently on something called Relvar but do question their effectiveness?I constantly ask myself questions...am I in denial?Do I underestimate the seriousness of Bronchiectasis?Do I actually have asthma?Is there something underlying that's more serious?My theory at the moment is it's something I have to manage and live with which is hard when I've been relatively fit until a year ago.I still feel I'm being overlooked at my GP and unsure of the whole issue.Sorry for dragging this post out but just wondering if there's people out their with similar stories?

[hypercat54]

Hi I too smoked and developed adult onset asthma around the same age you did. It rarely impacted my life as I was young and a lot fitter. You were probably mild like me. I was told mine had not been caused by, but brought on by smoking. I forgot I had it most of the time.

Unlike you I didn't stop smoking until last year 10 after being diagnosed with copd. I m still only mlld though which I am very grateful for.

Someone will correct me if I am wrong but I don't think bronchi is caused by smoking unlike copd and you have been very unlucky to develop it as it is not common. It is a shock to go from healthy to ill but there are ways to manage it and maximise your fitness.

There are a few on here with bronchi and I am sure some of them will be in soon who know a lot more than me.

I don't see any reason though to doubt your diagnosis? x

[Aitchic1 in reply to hypercat54]

Hi,

Thanks for your reply and info.I don't think it's so much I doubt my diagnosis,it's just I find it hard to believe that mild Bronchiectasis can make someone who was quite active(never on par with Mo Farah I must say)has now made me avoid exercise due to coughing,spluttering and gasping for breath?I understand these conditions have to be managed but at this rate I fear I'll end up struggling to carry out my job.I understand there are thousands of people a hell of a lot worse off than myself,I just don't know if it's normal to feel this breathless.I'm seeing my respiratory consultant next week so will obviously discuss the issues.I was wondering if any Bronchiectasis sufferers could educate me as I'm fairly recently diagnosed.Thanks.

[hypercat54 in reply to Aitchic1]

Mo Farah is great isn't he? From what I have seen on here I think mild bronchi if managed properly won't have such a big impact on your health. I have heard others say the most important thing is to make sure you have a consultant who specialises in this as otherwise it tends to be treated the same way as copd and this is a very different condition.

I must admit I would rather have copd than bronchi and I hope you find some answers. x

[Aitchic1 in reply to hypercat54]

Cheers

[cofdrop-UK]

Hi Aitchic, A very warm welcome to you but I am really sorry to hear of your health struggles. It does seem to be accepted that RA and/or the treatment can have an effect on the lungs. My rheumatologist once queried which came first with me the arth or the bronchiectasis. I mentioned that I thought it must be the bronch as I had had it from babyhood following double pneumonia and whooping cough, but he said it could be that I had a pre disposition for arth.

As I have had bronchiectasis all my life, I don’t know what it’s like to have healthy lungs and the devastation that being newly diagnosed must bring with it. Different problems. I was however diagnosed with athma too much later in life. So it is possible that you have both. You would need a ct scan to get a definitive diagnosis. Hopefully you will be seeing a respiratory consultant with a special interest in cf/non cf bronchiectasis. If you have bronch you really can’t afford to be in denial. If you have bronch your con should refer you to a resp physiotherapist to teach you how to do your own lung clearance and gadgets to help which suit you. Really if you have bronch, unless you are having an exacerbation you should really try and continue with as much excercise as possible - this also helps with lung clearance.

I am putting the latest inforation from the European Respiratory Society re non cf bronchiectasis, which I had a privilege to be involved with. As people with bronchiectasis are diverse the ERS Patient Priorities goes from basic information to interviews by clinicians for clinicians, so you can dip in and out of whatever parts you find helpful.

europeanlunginfo.org/bronch...

Good luck with your diagnosis and further ttreatment. Please let us know how you get on.

Love Sue

[Bella395]

I can understand why you feel confused. I care for my OH who also has mixed lung disease in the form of asthma and bilateral mild bronchiectasis. From that experience I don't think you should attach much importance to the diagnosis of 'mild' bronchiectasis.

He started out in his late twenties/early thirties with intrinsic asthma. It came out of nowhere but was always troublesome and he eventually had to go onto maintenance steroids. Anyway, his disease is, like yours very problematic and he has been having back to back infections, several due to pseudomonas. Recent blood tests have shown immune system problems. Every infection he has had has probably damaged his lungs further.

I don't know if this information will be of any use to you but we concentrate efforts on lung clearance. He uses breathing techniques (huffing), a Flutter valve, Aerosure PEP device, nebulized saline (sometimes hypertonic) and a Hill-Rom smart vest. He uses Atrovent and Ventolin nebules. Has tried Relvar but found it unhelpful. Antibiotic cover is currently Azithromycin 250mg daily and Colomycin nebules twice a day.

The only advice I can give is to find out as much as you can about your condition to try and improve matters. If you haven't already got a specialist consultant then look around to find one and ask for a referral. Bronchiectasis, particularly when associated with other condition/s needs to be managed by someone who is experienced and has an interest in the disease.

[Aitchic1 in reply to Bella395]

Bella,

Thanks for your reply.Seems a very similar pattern to me what your other half has experienced.Ive had numerous batches of steroids that work for a short period then it's back to feeling like I have a constant chest infection.I have lost my sense of smell(comes back whilst on steroids so it's not gone completely just inflammation is constant).I also have Rheumatoid Arthritis which I've learned affects the lungs.The hardest part about all this is going from a healthy,active person to someone who avoids excercise due to coughing,spluttering,breathlessness,sputum production.The worry I have is the rate of progression,will it get to the point where I can't work etc.I see a respiratory specialist again next week so will ask all this.

[donut43]

The main thing is that you have stopped smoking. Bella 395 has some good ideas.

Dan

[Angel1049]

Hi, sometimes it takes a change of medication. Or the wrong meds can also keep you down and you feel the disease is getting worse. Try using a nebulizer it reaches the lungs better to distribute the meds.

🙋🏼

[Aitchic1 in reply to Angel1049]

Thanks Angel.To be honest they've chopped and changed my medicines that many times I think they're also confused 🤔

[Bella395 in reply to Aitchic1]

Chopping and changing medication is probably pretty normal. You have to try things to see what works. You soon become an expert patient. Please don’t despair. See your specialist and learn how to manage this disease as best you can. You are probably going to gave to change things in your life to accommodate the restrictions imposed by your illness but it is doable. I regard it as a challenge and get very angry with those pesky bugs. You have to get mad at something! LOL

[jezz1953]

I would get a2nd and 3rd opinion