Newly diagnosed - my story

[Breathe-73]

Hi, I'm now 48 and recently diagnosed with COPD

I'd been unwell in December 2019 with flu like symptoms, once a little better I had a continuous cough but left it until March 2020 when I thought I best speak with a Doctor. I was given inhalers for asthma and over the months these were up'd to the highest strength steroid inhalers the GP could give me, along with oral steroids (x4 courses) and antibiotics (x4 courses) also added Montelukast, avamys (for chronic rhinosinusitis).

I had a xray in November 2020 which came back clear, then contracted covid19 in December 2020 whilst at work (painter & decorator, I've spent a lot of time off work recently due to being exhausted all the time).

In February 2021 I did a spirometry test and and had another chest xray beginning of June 2021 I had the consultation 2 weeks ago with the diagonis of COPD, Chronic Rhinosinusitis, along with Depression (all this has caused the depression, been on Sertraline 50mg for around 6 months). The consultant has prescribed Anoro Ellipta and would like me to have a ct scan as can see 'black patches' on my recent xray which he believes maybe holes! He would also like me to have a DEXA scan, as he put it 'you have a low BMI and a high steroid burden, we don't want you getting any fractures'

Although I've been dealing with this for the last 1 and half years, the diagnosis has come as a big shock, I believed it would be confirmed I had asthma. Anyway I thought I'd join this group and hopefully learn a thing or 2 to help cope better with life.

Thanks for reading my huge story! Breathe-73 ❤

[Maggie_Mae]

Welcome Breathe 💐I’m newish member myself , you will find this group a wealth of information, tips & good humour.

Your story similar to myself & can empathise with your long journey and shock.

[Breathe-73 in reply to Maggie_Mae]

Thank you for your reply. I maybe should have guessed it'd be copd, I smoked from a teen and stopped a few years back when vaping took over 🙄 Also my aunt and my fiancé's Dad has copd, I can see how much they both struggle so I'm really not looking forward to the progression 🙁 I guess taking more care of myself is the first step....I haven't vaped since the day of diagnosis. Crazy that we know what smoking etc does yet it takes someone to prove what it's done before you really see the dangers, all a bit too late but I have to stop punishing myself, what's been done has been done! I look forward to reading the posts for info and definitely the humour 😀

😘

[Tia4209 in reply to Breathe-73]

As you have been diagnosed young and hopefully in the early stages, it is possible that with treatment and healthy lifestyle you can maintain the lung function you currently have.

[Breathe-73 in reply to Tia4209]

Thank you for this reassuring message 🙏❤

[stamford1234 in reply to Breathe-73]

As Tia says, it is manageable, having accepted that it is a progressive disease, the aim for me is to slow the progression as best I possibly can.

[Damon1864 Volunteer]

Hello and welcome Breathe, so pleased you have finally got the right medication and diagnosis. This is a fantastic site and full of wonderful caring people. We love a good laugh but we are very supportive as well my we have a great admin team who will help support and guide you. Please keep posting and let us know how you are doing. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

[Breathe-73 in reply to Damon1864]

Thank you Bernadette & Jack 🥰I haven't yet started the medication as it's taken until yesterday for my GP to call to tell me the medication is now at the chemist, so I shall pick that up today and let you all know how I feel using it (if you'd like to know?! 😄)

I understand the nhs being under so much pressure right now, but I do feel I'm just being left quite a bit to just get on with it, apart from the xrays and spirometry test I've not seen anyone other than telephone conversations with gp and consultant. Sometimes I just feel as if I'm not taken seriously when I tell them I literally cannot breath easily, pains in my chest and have sweat pouring off me 😖 oh well only 3 months to go and I may get to meet my consultant 😊

Don't worry I'm not really a moany person 😃 just feeling a little down on myself today 🙃 (think this is why I've looked for a support group, perked me up already, thank you 😊)

😘

[Damon1864 Volunteer in reply to Breathe-73]

Yes please I would love to know how you get on🤗 and you can personal message me if ever you need to chat even just to rant and rave.😘 Take care😊 Bernadette and Jack 🐕 xxxxxx

[corriena in reply to Damon1864]

Wellcome, this is a good place for information, support, a good mone and a laugh we realy are a one stop shop lol

[sassy59]

Welcome to you Breathe-73, I’m carer for my husband (Pete is 70 this year) who has COPD, sarcoidosis, heart disease and chronic back problems. He has good medication to support his health issues and does quite well considering.

Looking after yourself is key and I’m sure you know that. Hope to hear from you again soon. Take care xxxxx

[Breathe-73 in reply to sassy59]

Thank you for your message, I bet you do a fantastic job taking care of your husband, I do worry about the future and having to rely on others, I don't have children of my own and worry my fiancé won't be able to cope with whats to come. Just typical me worrying so far in advance, but I am who I am I guess 😊

I'm still a little overwhelmed with the diagnosis and worrying about 'the black patches' my GP told me yesterday that there looking for an interstitial lung disease, it says on letter from consultant 'hyperexpanded lung fields' so much to take in, everyone's telling me not to worry, easier said than done 🙁 it's all the waiting and wondering that gets so frustrating 🥴😊

😘

[sassy59 in reply to Breathe-73]

It is a worry but hang on in there. You can live a long life with COPD so don’t despair. Pete is doing well and it’s good just to be together.

Best wishes to you. Xxx😘👍

[CDPO16]

Hi and welcome Breathe-73. Lots of support here from our friendly forum.

[Terrel_ALUK Partner British Lung Foundation]

Hi Breathe-73

I am sorry to hear the problems you have been having.

We have a team of Clinical nurses here who will be happy to have a chat with you regarding any questions you have regarding your diagnosis. Our helpline is open Mon-Fri 9-5.

03000030555 hope this helps

Take Care

[Breathe-73 in reply to Terrel_ALUK]

This is fantastic and thank you 😊 I'm sure I'll be in touch, very confused by a lot of what's been said, why can't Doctors reports be simplified for us non medical people 🤣

So pleased I've joined 😊😘

[peege]

Hi, welcome to you. Just want to say that its great that you're getting a CT scan, one of the best helps going forward. I dont have copd but have read so often here that you can slow the progression with healthy weight, diet and exercise. The fumes from your profession may have affected you in the past. Easy to say dont worry I know, stress &/or anxiety don't help us though and it could be a very, very long time before you need care help Wish you all the best. Let us know how you get on. P

[johnderby]

Hi Breathe-73. Welcome to the group. You will find many helpful people on here always willing to listen and proffer some advice. As you have been diagnosed early, with the right meds, and keeping as fit as you can, you should be looking at many years ahead of you. Good luck. John

[JetJet]

Hi, this is an amazing group , so supportive and helpful. Great you are due a CT scan. CT scan will give a better picture and help address what is going on. Keep us posted and good luck...and try not to worry!

[Dedalus]

Hello and welcome x

[Hidden]

Hello! I think it’s only natural to feel overwhelmed at a new diagnosis. I know I did. (I have an interstitial lung disease.) I still feel like that with any new changes to my condition. There’s a big difference between hearing the medical reports and details about the therapies etc. and understanding how best to live with your condition day to day. I think this group will be helpful with the latter. I find it reassuring that others have similar issues and worries but keep going with mutual support and humour. Be kind to yourself right now. You’ve had a shock and need time to adjust. Don’t feel you have to “get back in the saddle” straight away. Wishing you all the best.

[Breathe-73 in reply to Hidden]

Hi and thank you for your message, I already feel so welcomed to the group and can see just how supportive everyone is 😊 It has come as a shock, I think I'm also worrying a lot about the outcome of the CT scan and if I have ILD, I've googled this and seen the life expectancy 😐 very scary.I've not worked properly for over 6 months (done around 4 decorating projects), we've had to use savings alongside partners wage to help ends meet but the savings pot has almost been emptied. I've looked to see if we are entitled to any kind of help but all we can get with my partners wage is around £3 for the next 6 months. I feel I am going to have to return to work with no other option, it's a case of take care of my health with no roof over my head or work, have health decline, but keep a roof over my head! There is so much to think of which is sadly affecting my depression further. I just feel I've been put into a huge deep hole and told to get myself out with no help of ropes or ladders! I'm possibly feeling so down in the dumps with all the news, all I'm seeing is doom and gloom.

It's fantastic I've found this group so quickly, everyone is so kind, understanding and fabulous at reassuring and the advice is extremely valuable

🤗😘

[stamford1234]

Goodness you have been busy? Lots of good advice and nice folks on here about coping with COPD. Best to stay of Dr Google - incorrect rubbish.

[Hidden]

Oh dear. It is scary when you feel you have nowhere to turn for support and you’re still awaiting test results. I found googling ILD scary too. I have Hypersensitivity Pneumonitis with some associated fibrosis due to inflammation. I’ve been told to avoid the things that trigger the allergic reaction (birds, anything with feathers like pillows etc. and a type of medication I was once prescribed for another condition) and that the aim is to keep my symptoms as they are now. I’m on Prednisolone and portable oxygen at the moment. ILD is an umbrella term for a group of different diseases and my consultant told me not to take too much notice of what I read about fibrosis because the type I have doesn’t necessarily fit with the type most commonly written about. Different diseases and different individual patients can have varying outcomes as far as I can see. It has taken me quite some time to adjust my thinking but I try to focus on the smaller things now, like how far I can walk without too much difficulty and the fact that the oxygen helps me to do that.Do you have anyone you can talk to about your depression? Would it be worth asking your GP about counselling in your area? Maybe they could help you plan a way forward? Also have you contacted the BLF helpline? I have heard they are helpful.

[Breathe-73 in reply to Hidden]

See now that is so reassuring, thank you.Now I don't want to sound all woe is me, but sadly I lost my Mum (cancer), we was so close and I miss her terribly, I find all that's happening very hard without her around to speak to. After her sad loss I then went on to lose also my Nan, Grandad and my Uncle. (all since Sept 2018) to say it's been a crap few years is an understatement! I did wonder if all my lung issues had been bought on from the grief! I just mentioned all of this because you said about the counselling, I began grief counselling last week, so hopefully this will help.

[Hidden]

Oh my goodness. You have had it rough. I’m so sorry for all of your loss. I really hope the counselling helps. Take care x

[CaptainPugwash]

Welcome I was Diagnosed with Copd When I Was 41 Very Young Like U It Was Mild It’s The Progression Of The Disease You Get Worse Not Nice But Exercise Is The Key . I Had A Dexta Test Bones Found Out I Had Osteopenia Now Osteoporosis As Broke Hip 2015 .. You Take Care Keep Safe 🖤🖤

[Breathe-73 in reply to CaptainPugwash]

Hi and thank you for the welcome. My Aunt and my father-in-law both have copd and I can see how much it affects there lives, they've both been giving me some advice, and this site is absolutely fantastic, before I found you guys I'd been scaring myself with all I was reading on google! I couldn't believe it when I was told copd, I've always associated it with older people and surprised myself with seeing people in there 40's with it.

Look after yourself 😊

[Mpearl563]

My advise is if you smoke pack up, my sister died last year with copd she carried on smoking so shortened her life.she was diagnosed 12 years previous was 69 when she died ,sure she would have lived a lot longer if she had stopped smoking

[Breathe-73 in reply to Mpearl563]

I'm sorry for the loss of your sister, very sad, I can imagine it could make you feel a little angry that she didn't quit sooner (I think that's how I'd feel!) I stopped smoking around 7 years ago but I swapped for the vaping, sometimes I wonder if this did more damage then the cigarettes as I could cough no end at times when vaping (I guess also damage was already there from when I stupidly took up the habit of smoking at 15 thinking it's cool ) I haven't touched the vape since the day I was diagnosed 😊 shame I didn't do it sooner but it is what it is as I keep saying, I'm paying the price for it now 🥴