Hi! So I’m feeling pretty devastated with my recent diagnosis. I’m a healthy weight, I don’t smoke but I’ve had asthma all my life, suffered with pneumonia and bronchitis on and off , and therefore guessing this is the reason why I am where I am.
I’m waiting for my referral to come through to the hospital, and I’m just getting over my second chest infection in just over a month. Mentally I’m drained. I don’t know anyone my age with it, I feel alone. I read everything on the NHS how I should get emotional and mental support, let alone a plan, and so far I’ve had nothing. I’m not strong steroids inhalers but I keep getting flare ups, and the stress just makes it worse.
Im wondering therefore if there is anyone around my age on here who feels like I do?
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Hanjas
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Hi Hanjas. I do know how you’re feeling. I’m 48 now, but I was diagnosed with COPD 11 years ago at the age of 37.
I was a smoker, but like you I was also asthmatic and had numerous bouts of bronchitis and pneumonia. The consultant I saw told me it was these that caused my COPD not the smoking.
What inhalers are you on? I’m on Braltus for mine alongside the asthma inhalers.
ALUK do have a support line, so maybe get in touch with them. They have specialist nurses you can talk to that might be able to offer some help, guidance and reassurance.
It can be stressful, I get that. But see if you’re under a specialist respiratory team in your area, and try and get an appointment with them. Also, see if your doctor will refer you for Pulmonary Rehabilitation. This can be really helpful.
Hi Sykes, thank you for reply. I’m ok breezhaler (steroid inhaler) as well as salbutamol.
It was a further blow that my practice was supposed to have sent my referral back in January, but I found out last month that they didn’t complete it, despite it being on my medical notes to do. So since January I’ve been waiting for nothing and instead I’ve been getting infection and infection and just given more and a more antibiotics and steroid tablets.
Now having to chase everyday for to check up it. So at the moment I’m in situation where I don’t have a plan for when I’m wheezing as my salbutamol has no effect, which was confirmed on the spirometry I had.
I won’t let this beat me, but the stress of chasing doesn’t help.
Did they have you do a before and after test where you blew in the spirometer three times and then gave you a bronchodilator and then have you blow three more times? If not I would be a little skeptical of the diagnosis. Did they give you a copy of your results?
Yes I did. I was given the salbutamol, had to then wait for 10 minutes and repeat it all. Yes I have the results on my NHS app. I’m thinking of booking a private CT scan?
I’m glad you had the before and after test but a CT scan would show exactly what is going on. Will your doctor not refer you for one as you mentioned going privately?
If you don’t mind sharing it what is your FEV1% of predicted both before and after the salbutamol?
So basically the referral was on my notes to be made back in January…however for one reason or another it was never made, and so I waited until July to find out why I hadn’t heard , to then be given an apology and told they would action it and then sent me for this spirometry in August.
I’ll screen shot my results as I’m not sure which one. The nurse didn’t explain any of them to me other than it’s COPD mild obstruction. I don’t really know what any of the results mean .
There are other important numbers as well but your FEV1% of predicted tells your lung function which is 85% so you are considered mild, and technically you are in the margin of error as one can be normal with an FEV1% of predicted with anything above 80%, which you are. Your FEV1/FVC is below 70 so that is what they use to confirm COPD. If it was me I would definitely be asking for a CT scan. It isn’t urgent to have one immediately but at least when you do get one it would satisfy your desire to know for sure.
Eat healthy, exercise, try to avoid getting infections and maintain a reasonable weight and you may never get much worse.
If you do get a CT scan it would be great if you came back and let us know the results and how you are doing.
I am sorry to read of how you are feeling. I was diagnosed with COPD at the age of 40 and I am now 74 so it is possible to carry on and lead a normal life. Try and keep away from anybody who is unwell even if they just have a slight cold. Ask your GP if you can be put forward for a Pulmonary class which you will find mind useful and just use whatever medication is suggested for you and you will be fine.
Hi Hanjas…I was diagnosed at 40. with COPD I’ve had chest inflections and pneumonia throughout my entire life plus I smoked until then . once your on the right meds, given the right advice and don’t go into denial you’ll be able to lead a pretty normal life depending on the degree of your condition . I’m 87 now by the way.
Hi, I don't know much about COPD except that in UK it's an umbrella term including emphysema and chronic bronchitis. It's also diagnosed by spirometry test - is that how yours was diagnosed? If not I'd question the diagnosis especially if you've never smoked. Is there a lot of lung mucus? They do sometimes get diagnosis wrong ( NB I'm not a medic by any streth of the imagination)! Just years of experience and being on this forum for 11+ years. There is something called Alpha -1 Deficiency which pre-disposes one to copd, there used to be a simple finger prick blood test for it, I'd ask for that to be certain. (I'd also go private to put my mind at rest too even though I'm hard up)!
Other considerations: do you live or work in a polluted environment? IE building dust, mechanics, fabrics, fumes & dust of any kind? I do recall (from a savvy ex-member) that Southampton is high on pollution even though its near the sea. I did a great deal of DIY in my life, with sledgehammer & pickaxe I knocked down a coal store once amongst other filthy things - all without a mask 🙄. Stripping Victorian lead paint off huge old dressers, doors, windows with either chemicals or blowtorch etc.
Whatever the reason there must be something if you haven't smoked......... like many I was brought up in a smokey home (London smogs too), my stepfather thought it funny to blow smoke in my face to bring on coughing fits hence an abhorrence of cigs/smoke/smell.
The helpline number is 0300 222 5800 uk office hours, they're are excellent
Yes I was diagnosed through a spirometry. I suffer from lots of mucus that I really have trouble getting rid of, and in the meantime I never feel like I can get a full breath.
I was brought up in a really anti smoke environment, my dad was someone who detested it because he himself was brought up as a baby in the 1940’s with smoke. I’m probably on the verge of OCD with cleaning and my rituals with dust etc in my house, as I’ve become so paranoid about anything triggering my chest. I’ve changed all washing and cleaning products to natural cleaners as I know some major cleaning products set me off something silly.
At the moment I am waiting for the hospital to do their bit as my doctors surgery ‘misplaced’ my referral back in January (their apology for this didn’t go down well as you can imagine 😂) and I only found out after waiting all this time last month!!
So I’m currently waiting the consultation with the hospital , it’s just been hard feeling like I have no mental support as at the moment I don’t know about anything and it seems at guess work.
Well you've found us now 😀! Come and ask anything however small silly or odd it may seem. So many of us understand because we've been there too in similar ways. This forum and some wonderful members saved me all those years ago. If it is copd do ask for the Alpha-1 Deficiency test which would explain the positive copd diagnosis - I'm not convinced. My first thought on reading your post and now knowing about the excessive mucus is bronchiectasis but of course I'm not a medic.
As Swizzy says, it's imperative that you try to get rid of the mucus, whilst it lingers in lungs it's a perfect warm wet environment for bacteria to grow and multiply.
There are other lung diseases too of course so oll on your consultation with a specialist I say. Coincidentally my first ketter from GP to respiratory department went astray too, so maddening when it prolongs the agony of not knowing on top of needing help.
Do keep in touch won't you to let us know how you get on . P
COPD is a disease, in line with others, however, causes can be difficult to diagnose. Aside from smoking apparel as a cause.It is usually environmental or chemically induced. i.e,;
I don't know who 'diagnosed' uou with copd but your young age, lifelong asthma;non smoker, frequent chest infections point far more to bronchiectasis. GPs and respiratory nurses know very little about it and often wrongly recognise and treat it as copd. There are so many cases of people being wrongly diagnosed as copd. Particularly with a history of asthma. You need a specialist diagnosis before you accept that you have copd.Bronch needs to be managed, particularly by the patient but you can have a really good life living with it.
You need to take matters into your own hands and firstly by getting a proper diagnosis from an expert. Look for a bronch specialist who are usually at big teaching hospitals. Find a name, take it to your GP and INSIST on a referral. Do not let them send you to a general respiratory clinic. They do not have the training or experience in bronch. A bronch expert can also diagnose and treat copd so you will know that you are on the right track. Bronch specialists have their own team of nurses,physios, access to hospital services and knowledge of the treatments.
Please don't just accept what is told yo you. We have to be pro active on our own interests and vociferous in getting the right treatment.
Thank you for your reply. I was diagnosed through a spirometry I had done. It showed a negative response to my salbutamol too…which is annoying as I always have a wheeze these days.
Your message does give me hope that perhaps it could be something else, I will push until that have explored everything for sure.
I have thought about trying to go private, however the cost of this I imagine would be a lot, but I will look for a branch specialist and take your advice on board as that does sound like a very good plan.
Yes Spirometry is a very basic test which shows an element of obstruction which can also be present in bronchiectasis. Even xrays cannot show bronchiectasis. The person testing you should have taken into account your age ( I was diagnosed at 3), your lifelong asthma and especially that you have never smoked. You really do need a ct scan. Please do as I suggested to find a bronchiectasis specialist. So many people on this forum have suffered for years because they don’t get to see the right person. Once they had a proper diagnosis their lives changed so much for the better.
Just sent a private hospital a request for a CT just before my reply. So many people have said the same as you, so I think the £400 will be worth it, what do I do with the results? Will anyone actually act on them or will I be left waiting do you think?
You still need a bronch specialist to interpret the scan and decide on your treatment regime. Ins companies will not pay for bronch as it is chronic. The best bronch consultants are on the NHS, usually at large teaching hospitals. There are many general resp cons who work privately but they don't necessarily know anything about bronchiectasis. This is why I seriouslr suggest that you find a bronch specialist and insist on being referred to them. Mine is at the QE in Birmingham. I have been with her for 20 years and with the man who taught her for 20 yrs before that.
The CT results usually have the details and then a summary. Depending on the results hopefully your doctor would make the appropriate referrals to specialists but if it would happen to be bronchiectasis then as Swizzy recommended seek out someone that specializes in bronchiectasis.
You could also come back here and post your results and I’m sure there will be numerous recommendations, and perhaps you will be pleasantly surprised as well if they are not as bad as feared and will put your mind at ease.
Welcome to the forum and I am so sorry to hear how you recent diagnosis has affected you.
Excellent advice from our members so I will just add our website for you to have a look at. All the information on there is up to date and there are resources you can order or download if you wish.
Feel welcome to call even if it is just for a chat.
If you are 38 and never smoked (active or passive) but have been a lifelong asthmatic, then that would be very surprising if it were COPD. As mentioned about much more likely to be Bronchiectasis caused by repeated infections over many years due to your asthma. Asthma and Bronchiectasis can be tricky to manage together as the two conditions work opposite to each other - asthma makes your lungs angry and narrows the passageways whereas Bronchiectasis makes parts of your airways house all sorts of persistent and pesky bugs which make loads of sputum which causes more infections which you struggle to cough out due to your asthma. It’s a troubling combination. Bronchiectasis HAS to be diagnosed by a high resolution CT scan nothing less will do it and your doctors surgery don’t know what they are talking about just telling you it is COPD. It may not be and if not it needs different management especially if you have asthma. You need testing for ABPA as well if you are a lifelong asthmatic and Bronchiectasis is confirmed. Get yourself referral to a BX specialist at a decent teaching hospital, do your research before your appointment and ask lots of questions then they can help you manage it carefully and diligently and don’t let anyone give you aCOPD diagnosis if it is not. BX can be really difficult to manage but I’ve had my diagnosis many years now and still work full time, manage a very heavy drugs burden when it’s really being difficult, exercise regularly and have a full and rewarding life. I’m on first name terms with those in my medical team - if you want to help yourself and manage it well then there is help and resources out there- you just need to push hard for a correct diagnosis and not accept what your surgery tells you until you have had a proper consultant led diagnosis and then become what they call an expert patient!!
I’ve made numerous complaints to my surgery that they keep inviting me to a COPD review when I have asthma Bronchiectasis and ABPA and colonised bacterium - they just don’t understand the differences in primary care clinic unfortunately. You need a specialist but keep your chin up and keep persisting and you should then get the support and meds you need to stabilise the position so you can move forward with a “new normal”. Good luck
I have joined this evening after a very long and continuing battle with bronchiectasis, but one that I’m mostly winning and leading a normal life majority of the time!
I’m 39 diagnosed at 32 (so that similar age you mentioned!) still hanging onto to my thirties just about, Never smoked hardcore, socially smoked when younger with a beer prob thought I looked cool. Diagnosed with asthma very young and grew out of it and then summer 2017 had back to back Pneumonia resulting in ITU and lengthy hospital stays then culminating in third pneumonia this time with severe Sepsis (this time I was lucky I made it home, but I did… hence my profile name!) I was diagnosed with most tests and CT was the ultimate decider so defo recommend getting ball rolling there and also the reply re getting in with good respiratory consultant+team, literally be on the end of phone for you once your in system!!!
Basically joined this evening after my first bad flare up in just over two years that I couldn’t manage myself at home. Been on full time maintenance antibiotics (azithromycin) m/w/f for last 7.5 years, nebuliser at home etc, my flare up period is summer and its happened again after me and my respiratory team trialled me coming down off full time meds. I’ve had bad episodes but dealt with them myself and phone support of respiratory team/Gps (that btw call you the expert after a while, they’ll tell you… you know your chest best) this one I couldn’t shift on my own and needed IV, it happens!!
But yeah just wanted to let you know you ain’t alone, I still work full time (though recovering again now) husband, dad to three young ones…. Busy here but keep ploughing through! Helps me to help others, well just to talk helps too!!
I'm not your age, have suffered asthma now have an abundance of lung issues. Constant. infection from March. You need a respiratory team and consultant on board. Getting that was going to be 54 wks. If normal antibiotics are not helping, ask your GP to get you in to AE for urgent IV antibiotics. This helped and meds, immensely, I have the team. All via AE take yourself there failing that, Do not be fobbed off
heh I’m so sorry you feel so alone in your diagnosis . Even though the hospital try to help as much as they can it can get lonely and very scary still at times esoescially when your so young. I thought I would reach out and say that you’re not alone . My partner is 44 yrs old and was diagnosed with COPD 8 yrs ago after he got over a very near fatal case of TB even though he was vaccinated at school age.I just wanted to let you know there are so so so many things you can do and look at doing to give yourself the best chance of living as best as you can and there are so many meds you must say if you feel you want to try other inhalers etc ! Please get in touch if you want any information or ask any questions . I’m not a medical professional I must stress that however for the past 8 years I have made it my mission lol to learn as much as I can and I can signpost you to places I found useful . But don’t isolate yourself and please reach out to anyone you can confide in etc if you feel desperate
So I went private. Saw a respiratory specialist, paid for a CT scan and finally have the correct diagnosis. It’s not COPD 😀😀
I have bronchiectasis and a breathing pattern disorder. Both I’ve never heard of before. The CT showed widening of my tubes most likely from bronchiolitis at 10 weeks and pneumonia throughout my life.
Had I continued to listen to the diagnosis I was given of COPD, I would have been still been on the waiting list , suffering from huge amounts of stress and worry and unsure of what was ahead. Sadly it’s come to a point where now you need to pay for the grade of service you are given, and it was worth every penny.
I spend just under £1000 for it all, including a CT scan, private consultation , my physio and a private prescription.
Finally my diagnosis makes sense. Within the first 10 minutes of my consultation, the consultant said I do not have COPD and in fact it’s bronchiectasis. He was able to look at the spirometry results, and never once thought it was COPD. Also he took the time to listen to what I was saying about my past history with lung problems. So it shows it pays to have someone who knows their stuff as this was confirmed in the CT scan shortly afterwards.
I’m already feeling a lot better physically too. I think the stress of the wrongly diagnosed COPD was making me more tight chested. Now with me doing my physio to help clear my lungs everyday, sorting out this breathing disorder and peace of mind, I do feel 100 times better.
Thank you all for all your replies and support, I do appreciate the fact you all took time to reach out.
I think there are lots of lessons to learn from this..
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