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Newly diagnosed - my story

Breathe-73 profile image
Breathe-73
โ€ข29 Replies

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 โค

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29 Replies
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Maggie_Mae profile image
Maggie_Mae

Welcome Breathe ๐Ÿ’Iโ€™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 profile image
Breathe-73โ€ข in reply toMaggie_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 ๐Ÿ™„ Also my aunt and my fiancรฉ's Dad has copd, I can see how much they both struggle so I'm really not looking forward to the progression ๐Ÿ™ 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 ๐Ÿ˜€

๐Ÿ˜˜

Tia4209 profile image
Tia4209โ€ข in reply toBreathe-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 profile image
Breathe-73โ€ข in reply toTia4209

Thank you for this reassuring message ๐Ÿ™โค

stamford1234 profile image
stamford1234โ€ข in reply toBreathe-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 profile image
Damon1864Volunteer

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 ๐Ÿ˜Š Bernadette and Jack ๐Ÿ• xxxxxx

Breathe-73 profile image
Breathe-73โ€ข in reply toDamon1864

Thank you Bernadette & Jack ๐ŸฅฐI 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?! ๐Ÿ˜„)

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 ๐Ÿ˜– oh well only 3 months to go and I may get to meet my consultant ๐Ÿ˜Š

Don't worry I'm not really a moany person ๐Ÿ˜ƒ just feeling a little down on myself today ๐Ÿ™ƒ (think this is why I've looked for a support group, perked me up already, thank you ๐Ÿ˜Š)

๐Ÿ˜˜

Damon1864 profile image
Damon1864Volunteerโ€ข in reply toBreathe-73

Yes please I would love to know how you get on๐Ÿค— and you can personal message me if ever you need to chat even just to rant and rave.๐Ÿ˜˜ Take care๐Ÿ˜Š Bernadette and Jack ๐Ÿ• xxxxxx

corriena profile image
corrienaโ€ข in reply toDamon1864

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

sassy59 profile image
sassy59

Welcome to you Breathe-73, Iโ€™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 Iโ€™m sure you know that. Hope to hear from you again soon. Take care xxxxx

Breathe-73 profile image
Breathe-73โ€ข in reply tosassy59

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 fiancรฉ 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 ๐Ÿ˜Š

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 ๐Ÿ™ it's all the waiting and wondering that gets so frustrating ๐Ÿฅด๐Ÿ˜Š

๐Ÿ˜˜

sassy59 profile image
sassy59โ€ข in reply toBreathe-73

It is a worry but hang on in there. You can live a long life with COPD so donโ€™t despair. Pete is doing well and itโ€™s good just to be together.

Best wishes to you. Xxx๐Ÿ˜˜๐Ÿ‘

CDPO16 profile image
CDPO16

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

Terrel_ALUK profile image
Terrel_ALUKPartnerBritish 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 profile image
Breathe-73โ€ข in reply toTerrel_ALUK

This is fantastic and thank you ๐Ÿ˜Š 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 ๐Ÿคฃ

So pleased I've joined ๐Ÿ˜Š๐Ÿ˜˜

peege profile image
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 profile image
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 profile image
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 profile image
Dedalus

Hello and welcome x

Hello! I think itโ€™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. Thereโ€™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. Youโ€™ve had a shock and need time to adjust. Donโ€™t feel you have to โ€œget back in the saddleโ€ straight away. Wishing you all the best.

Breathe-73 profile image
Breathe-73โ€ข in reply to

Hi and thank you for your message, I already feel so welcomed to the group and can see just how supportive everyone is ๐Ÿ˜Š 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 ๐Ÿ˜ 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 ยฃ3 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

๐Ÿค—๐Ÿ˜˜

stamford1234 profile image
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.

Oh dear. It is scary when you feel you have nowhere to turn for support and youโ€™re still awaiting test results. I found googling ILD scary too. I have Hypersensitivity Pneumonitis with some associated fibrosis due to inflammation. Iโ€™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. Iโ€™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 doesnโ€™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 profile image
Breathe-73โ€ข in reply to

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.

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

CaptainPugwash profile image
CaptainPugwash

Welcome I was Diagnosed with Copd When I Was 41 Very Young Like U It Was Mild Itโ€™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 ๐Ÿ–ค๐Ÿ–ค

Breathe-73 profile image
Breathe-73โ€ข in reply toCaptainPugwash

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 ๐Ÿ˜Š

Mpearl563 profile image
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 profile image
Breathe-73โ€ข in reply toMpearl563

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 ๐Ÿ˜Š 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 ๐Ÿฅด

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