Newly diagnosed

[Discograph]

Just joined. I have had asthma since I was 13 and was diagnosed with COPD 4 days ago 😢 I am 47. I don't feel that I have the information I need or that the diagnosing consultant or my doctor have been very thorough. Supposedly the respiratory team from my doctor's surgery are going to call me I don't know what stage I'm at or what I should ask. I want to know how long I have left before I end up on oxygen. I don't know what to do and I'm really scared😥. Sorry for rambling, I need help!

[hopetorun]

Hello and welcome to the group.

I dont think you should look at it in that way.

I am 60 anf had copd from 28 and i am still not on oxygen

The most important thing is getting exercise. This helps to keep you strong so you can cope with the peaks and troughs of these conditions. Eating well and not smoking are also important.

I hope you can come to terms with where you are. Best wishes

[Badbessie]

Obviously if you smoke stop. As others have stated exercise is very important. Keep active and learn as much about the condition as possible. The BLF as some very good information that you can download. Keep away from Dr Google. When I was first diagnosed over three years ago I received excellent advice from this site on all aspects of COPD. My lung function as actually improved. Doctors can give inhalers, nurses can monitor your condition but you are the only one that can change your lifestyle etc to improve your condition and slow progression.

[Discograph in reply to Badbessie]

Thank you. I have managed not to smoke since being told. I also have a very gravelly voice, scratchy sore throat and a feeling of a difficulty swallowing. I am now worried that I gave some kind of throat cancer. I am waiting for both the respiratory team to call me and a "phone consultation" with the ENT consultant. Thank you for your comments 🙏

[MiFerna in reply to Discograph]

Hello Discograph.. I was wondering how are you feeling after three months and if you've managed to get more information about your condition. I was diagnosed with mild emphysema two days ago (picked up by a CT scan ) and I also had exactly the same symptoms described by you, gravelly voice, sore throat and difficulty swallowing. I was told that they are mostly caused by anxiety... still two days later I am discovering new symptoms and sensations.. discomfort in the middle of chest and diaphragm, bloating stomach, air hunger even when resting , sleeping problems,. I am pretty confident that anxiety has a lot to say in many of these.. Anyway, let us know how are you doing? Best wishes..

[Discograph in reply to MiFerna]

Hi, I still have all of those symptoms but the discomfort in my chest has eased since I stopped smoking. I'm still no closer to having any other breathing tests or assessments conducted by my GP. They're useless and almost inactive since Covid-19 hit. I have been more or less left to my own devices, frankly I'm disgusted with them but hey what do you do. It's not like you can complain when it's the NHS. I have had awful experiences with NHS before with other illnesses. I have slightly improved my fitness, I think. I have been using a stepper everyday (nearly) to improve my breathing. I am able to step faster and for longer without getting out of breath. How are you doing with your diagnosis? It's a horrible shock isn't it? I was really depressed for around 6 weeks then I started exercising and felt a bit better. However I'm still upset, good days/bad days. Yesterday I had a meltdown after talking about it to a friend I hadn't spoken to in a while cos of Covid. It just hit me again, the magnitude of it, and I couldn't stop crying 😢🙏

[sassy59]

Welcome Discograph, you’ve had two great replies so far so a good start. Please try not to become over anxious because that won’t help.

I’m carer for my husband Pete who was diagnosed with COPD ten years ago (he also has sarcoidosis) but is not on oxygen.

Follow advice and come and chat whenever you want to. Take care xxxx

[rossie1942]

Hello Discograph Everyone feels as you do when getting a diagnosis of copd. Alone it can't be true how long will I be able to live a normal life etc etc.. The great thing is that this forum will introduce you to people who have had copd for years and remain active working people. It can be a positive as you will be monitored and there is effective treatment. Keep in touch don't despair you will cope and once over the shock you will realise that you are as fit today as your were before they uttered those awful words. It is not a death sentence. Best wishes keep on in there

[Discograph in reply to rossie1942]

Thank you. I'm not impressed with being told in a 5 min phone call and then just left to cope by myself. I don't really have any confidence that I will get the care and information I need to be able to cope. I haven't smoked since getting this diagnosis.

[23september in reply to Discograph]

My phone consultation was very brief too. Definitely left on your own to cope with it. Ended up googling a lot to find answers which get you more anxious. 😳

[Damon1864 Volunteer]

Hi please don't worry about how long before you go on oxygen, a lot of people don't seem to need it. Just get excise every day eat healthy and stay positive. You can always chat on here to someone we all support each other. You have a lovely day and stay safe 😊 Bernadette xx xx 🌈

[Riverhopper]

Hi and wecome.

Your situation sounds similar to mine. I was diagnosed with copd at the age of 49, about 18 months ago. At first I was adamant they were wrong as the only symptoms I had were 2 days where I could not breath properly and they fixed that with a course of prednisolne. My life turned upside down as my dad died with the same condition. I have found coming on this site a breath of fresh air, although the gp prescribes the medication when I need it, mentally I have found this site more than helpful, especially at this time. Although I did have another attack in January and another course of steroids and I was put on daily braltus, I still work fulltime (furloughed at the moment) cycle daily and attend regular yoga (both I believe are keeping me well). Infact apart from medication my life is pretty much what it was prior to diagnosis. Im sure you will get to this point, take care of yourself and carry on with this site, I hope you find it as encouraging as I have

[Discograph in reply to Riverhopper]

Thank you.

[HungryHufflepuff]

Hello and welcome 😊

I'm sorry to know you've had so little support or information from your doctor. I know these are difficult times due to the Cronabirus but it feels like too many people are being left to fall through the cracks. Hopefully you'll be able to get some advice and answers here, everyone is so knowledgeable. Also the BLF has several information leaflet and things to give you practical info and support. 👍 Wishing you all the best.

[Deep-Purple]

Hello 👋 my first message to you is, don’t panic, you’re going to be ok AND we’ll done 👍 giving up smoking 👏👏👏👏👏👏👏👏👏 I felt just as you do now but have since realised that COPD is a much more common condition than I realised. And I’m saying “condition” as opposed to “disease” as that word alone can be a little scary can’t it. But the good news is, you can still lead a full life and may not ever need oxygen. I have my preventer inhaler and a back up reliever and manage very well. But like you, I gave up smoking which made me feel a lot better U can tell you! 💞I can’t run but to be honest I never could as I’m built for comfort not speed 🤣. I do get a little breathless, especially with stairs but just have to take things at a steady pace. I work full time too but as I mostly at a desk that’s not been an issue. There is a website to support you stopping smoking called WhyQuit.com. It’s amazing and they have a Face book page too which provides live support in the form of people who either have or are quitting. It got me through. I’ve been nicotine free for over a year and a half. Best thing I ever did. It will really improve your breathing. It’s a shame your diagnosis has come during this lockdown but hopefully you will get support here. Are they going to prescription you some inhalers? Chin up chuck. You’ll be ok 👍

[Discograph in reply to Deep-Purple]

Thank you so much for your kind words, much needed. I don't think the smoking will be an issue, as soon as they told me I stopped I had been trying for about a year and recieving this news leaves no choice. There's no room to muck about now that's for sure. My big problem atm is that neither my doctor nor the resp nurse will see me. The nurse phoned today and she was no help at all. Couldn't answer any of my questions, just kept saying "....ummmm, ummmm". I told her I'm struggling on the fostair, an hour or so after taking it my chest is tight again and I'm struggling to breathe. She offered nothing apart from saying she would call me again! What good is that to me, I don't understand, shouldn't they assess me even with the lockdown? Don't you think treatment such as this is essential? I don't understand why they are being so nonchalant and vague about it. I know you may not have the answers but I don't have anyone I can talk to about this much, only one other friend. Unfortunately there aren't many people in my life that I trust 😥

[hopetorun in reply to Discograph]

It can take a while to get medication right. They will try different ones. Unfortunately it is difficult to see gps at the moment. Fostair msy not suit you or you may need a spacer to help you get the medication into your lungs. I have changed to breath activated inhalers such as symbocort and pulmocort.

This seems to be working well at the moment. I wish you all the bedt. X

[Deep-Purple in reply to Discograph]

Hi there, sorry Im still finding my way around and didn’t realise you had replied. Did you have an initial test? Think they call it Spirometry. Where you breathe in then exhale as much as you can on a measured gadget you hold in you’d mouth? I had a different inhaler on first diagnosis but still felt bad so went into Fostair. You need to find the one that suits you. My doctor recommended I take the blue inhaler then wait for 10 mins to open up the airways and then take the preventer. That worked for me because at first my lungs didn’t seem to open up enough to get the preventer medication in . I can’t believe you can’t see someone at you’d Gp surgery . My neighbour had to today about their sore arm!

[Discograph in reply to Deep-Purple]

Hi, thanks for your reply. My diagnosis was by CT scan and the consultant didn't say much more than that. The doc/nurse won't do and breathing tests atm. I asked the COPD nurse and she said it's not a good idea to have anyone breathing into a tube atm! Today I have had to do an online consultation form in the hope that the doctor will call me back tomorrow. When I call my docs there's always a queue of about 18 people and if you do manage to get through all the appointments have already gone! I'll just have to hope they call and that it's an actual doctor this time and not a nurse like last time. I'm so stressed and my doc surgery seem to be completely incapable of caring 😩

[Adirock]

Hiya Discograph, when I was first diagnosed earlier last year I had never heard of COPD and kind of went through first couple of months in a daze, well nearly a year really. I was lucky with my COPD specialist nurse and was able to pop to the chemist and ask for a private chat if I had any questions and didn't like to bother the nurse. But I also made the mistake of using google which so depressed me and freaked me out. I was lucky enough to be put on a rehabilitation pulmonary course before lockdown. It's a 12 session course with others with lung conditions and numerous specialist and physical trainers there to help guide you through and inform you on diet, exercise, medication etc. We hadn't completed our 12 weeks before lockdown but what I did pick up was invaluable. I felt much better physically due to eating better through their teaching and mentally and emotionally they helped me so much. When this lockdown is over, ask about these courses and if there are any available near you. It was 2 days a week for me, tue and thur's, both sessions for 2hrs. 1st hour was exercise then the 2nd hour was a talk with whichever specialist they had for us on that day. Also I was lucky enough to stumble upon this site, it has also been invaluable to me, I've learnt so much and still am from reading peoples posts and asking questions or advise. This site is amazing, it's so comforting knowing it's here just by clicking a button. I haven't felt alone since I found it. It's also very uplifting and funny at times, gives you a boost if your feeling a little bit blue. I was advised to keep away from google and to use the British Lung Foundation site or the NHS site. I hope you feel less scared soon, such a horrible time for you especially as we're in lockdown so not everything is available to you at the moment with regard to face to face but this site and all these wonderful people are 🤩👍 You will be ok 😘 xxx

[Discograph in reply to Adirock]

Thank you for taking the time to reply to me. I am really happy that everyone is so supportive. I will definitely remember your advice 🙏

[Caspiana]

Hello Discograph , 👋

I see everyone has already given you such good uplifting information. I know you are upset they won't see you at the moment, but I think they are keeping people away from medical facilities as much as possible until things calm down.

As Hopetorun has said exercise is REALLY important not just for your physical health but your mental health. Try and keep moving even if it's for a half hour of walking.

Almost everyone who comes here initially, with COPD or other lung conditions sort of stumble in dazed, confused and upset. This is a phase you will go through, but eventually you will settle and start to gain some acceptance. It takes time. But it will happen. You've found a good forum that cares and tries to be helpful to everyone. 😊

Best wishes to you,

Cas xx 🙋🐕

[Discograph in reply to Caspiana]

Thank you so much, yours words bring me some comfort and have had a somewhat calming effect. Very grateful 🙏 I am eating natural food as much as possible, cutting out all types of processed rubbish, not perfect but getting there. I am exercising but I am only able to do it in short bursts and then need to rest. I hope this will get easier.

[Adirock]

youtu.be/nwxy9FLBMjk(Not working as expected?)

Hi again Discograph, I was thinking back to what helped me and remembered I found a lot of informative and useful videos on youtube. I hope I've copied the link correctly. Not sure if it will help you but may do 🤞🙂 xxx

[Discograph in reply to Adirock]

Ooo! Thank you for this I will watch tomorrow for sure. Grateful for you taking the time to post this

[Adirock]

youtu.be/kC-H8fFzZes(Not working as expected?)

This is also a good one xxx

[Discograph in reply to Adirock]

🙏😊👍

[23september]

Do your breathing exercises as much as you can. Definitely helps with shortness of breath and try to go for walks if you can and drink plenty. I tend to have warm drinks now. Take care