Homely21 month ago

Copd is a lung condition in itself, like asthma, but different, more constant, while asthma comes and goes.

You obviously need to spend some time with the person in the NHS who is your main contact for copd, to go through this diagnosis and the implications. There should be a letter of diagnosis somewhere, which your gp receptionist will have on your medical records.

If your consultant diagnosed you but did not talk to you, contact the consultants secretary and ask who can take you through it, eg if not the consultant, then ask if you can speak to an asthma nurse at the hospital.

If somehow the gp has arranged this, though in my area this would be consultant led, then back to the gp, or the asthma nurse at the gp practice.

You need to find somebody to pin down who will take you through what they found in the spirometry. Then to tell you about copd and how you manage it.

So some time on the phone, being very politely assertive.

Musicqueen49 in reply to Homely21 month ago

Thanks a lot. I have not seen a consultant, but will be asking lots of questions with my GP

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garshe1 month ago

I was diagnosed with severe COPD 13yrs ago. I never asked and, I have no desire to know any more. I just concentrate on looking after myself and hopefully slow down the progression.. The worse thing is when some concentrate on figures after tests.

We are all different and I have seen some in wheelchairs on 24/7 oxygen with better lung function than myself who have just given in and feel sorry for themselves.

Be Positive and always concentrate on what you can do not what you cant.

I am 78yrs young and today I am going to wash my kitchen tiles down and give my kitchen an early Spring Clean . Slowly but surely and have a little stool to stand on to reach top cupboards so no stretching and no bending. If everything is eye level so much easier.

"Where theres a Will theres a Way "lol. It will take me longer as I will keep stopping and sitting to recover lol

Be Grateful for every single day and remember others who do not have COPD or other illnesses still get older and are not as fit as they used to be.

Everyone loses lung function from the age of 27yrs

I never complain about getting old as I class it as a privilege even though I cant do what I used to . COPD is not terminal its Progressive. You can control this and slow it down

Good luck xxSheila 💕⚘

Musicqueen49 in reply to garshe1 month ago

Thanks SheilaWoman after my own heart. I am a believer in self help, but would like to know a little more about my diagnosis. I am fit and healthy in general. Do get bouts of coughing and chest congestion which hopefully I will be able to manage. Its just come as a bit of a shock

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garshe in reply to Musicqueen491 month ago

Hope you get the answers sion best of luck xx Sheila 💕⚘

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PaulineHM1 month ago

Hello Musicqueen,

Great reply from Homely 2.

First off I would have a consultation with your GP…asking those questions which you like an answer to an are entitled to. If you aren’t sure which questions to ask then perhaps have a word with the British Lung Foundation nurses on the BLF help line to guide you through what will benefit you to know.

Not everyone wants to know the ins and out of their condition but I did and sounds like you do too.

When I was first diagnosed 20 years ago my mains issue was Asthma, which I had never had before. So I was diagnosed with ACOS -Asthma COPD Overlap Syndrome.

When you get the answers you need then perhaps you will be able to get a self care plan together for yourself ? It will help you to keep as well as possible, avoiding lung infections etc.

Let us know how you get on won’t you.

Keep well.

Pauline

Musicqueen49 in reply to PaulineHM1 month ago

Thanks Pauline Appreciate your great comments and will take them in board.

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Bingo881 month ago

Ask to see a Respiratory nurse and get answers from her. There's a number of inhalers that they can give you but all don't suit everyone . Take care and hope you get Answers. Brian

Musicqueen49 in reply to Bingo881 month ago

Thanks Brian for the advice

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Karenanne611 month ago

Hi and welcome to this friendly, funny and informative forum. My diagnosis is copd but I had a long discussion with my consultant about changing diagnoses, especially asthma and bronchiectasis appearing and disappearing on my notes! It made sense last week but the most important thing to me was treatment that worked. It's important to be under a specialist. You can request that your gp refer you. Some don't like doing it as a) they feel affronted and as if they are admitting defeat and b) the surgery gets fined for too many referrals. I say tough! Their tender feelings count as nothing against your health. As 'garshe' says, ultimately, numbers and names are not everything but some of us like to know.

Patk1 in reply to Karenanne611 month ago

Why do they get put on+ taken off Karenanne61

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Karenanne61 in reply to Patk11 month ago

I understood last week cuz my consultant is very good at explaining things. Maybe another member can explain it better. Some diagnoses depend on the interpretation of the radiologist and other personel involved. New research can also alter the terminology used. My scans show bronchial wall thickening and evidence of bronchiectasis but I produce very little mucous, even during an exacerbation. The asthma is now noted as 'background of childhood asthma' and the copd takes precedence.

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Patk1 in reply to Karenanne611 month ago

At least u know now+ can receive appropriate treatment x

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Musicqueen49 in reply to Karenanne611 month ago

Thanks Karen.Great advice

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Chelsea19851 month ago

Hi, i myself had a copd diagnosis back in 2020 copd is an umbrella term which covers a range of lung diseases. copd is the broader term. Mine was identified by an abnormal xray which triggered a contrast ct scan which showed I have emphysema and that was explained to me at thr hospital by the lung consultant. I would ask for a ct scan and maybe you need more inhalers, preventers? As well as relievers. I have copd reviews annually and use 3 types of inhaler a day and Carbocisteine 3 times a day. Im 37. your Dr should really be signposting you to get you the support, advice and tests necessary.

I hope you find the support you need.

Musicqueen49 in reply to Chelsea19851 month ago

Thanks ChelseaI will take your comments on board. I may ask for a scan

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Sea1321 month ago

Bless you. Ive been gping through pretty much the same as you the last 12 months. They are doing my head in. Hope they give you more clarity soon. Bless up.

Musicqueen49 in reply to Sea1321 month ago

Thanks Seal132It may be because I'm newly diagnosed. I will be asking questions

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Patk11 month ago

U need to speak to gp or rrespiratory nurse.I'd make a list of anything u want to know& any questions u have,before hand. Who ordered yr spirometry tests? Have u had a chest x-ray or scan? I hope u can get answers so u know how best to manage yr health x

Musicqueen49 in reply to Patk11 month ago

Thanks Patk1The nurse ordered the spirometry test and diagnosed COPD. She did speak to a GP and does so before prescribing any meds. I had a chest xray about 6 months ago which they said was clear. I have not had a ct scan as yet

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katieoxo601 month ago

Hello Musicqueen 49, you are now in the system for Copd speaking from experience it could take a lot of persistence to get a clear diagnosis and treatment. Spirometry usually rules out Asthma but you need more tests to confirm what lung illness you have for certain. It took me three years to get a confirmed diagnosis , and the mystery continued for even more years and to this day they still persist in saying its not till they hear the cough, to spite a top proffessors diagnosis at Leicester clinic and I do have it in writing signed and dated. So my advice would be persist in asking questions of all the staff who treat you, as said be assertive and if you don't get answers complain to healthwatch, Pals or other orginisations because even doctors make mistakes. Its your health and you need a correct diagnosis in order to have it treated correctly to make life better for you and allow you to get the maximum potential from your lungs to spite this diagnosis. Every Best Wish and good luck on a speedy decision as to what is best for you.

Musicqueen49 in reply to katieoxo601 month ago

Thanks katieSorry you have had years of indecision etc. Good advice you have given. I know it can be a complex disease, but yes the correct diagnosis is important

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Superzob1 month ago

It might not matter too much what type of COPD you have, provided the diagnosis is correct so that you get the appropriate treatment (the inhaler in your case). I say this because my doctor originally diagnosed me with COPD but, when I saw the consultant, he was more inclined to call it “fixed small airways obstruction” (which amounts to the same thing!) because I had never smoked and was unlikely to have bronchitis or emphysema - however, the treatment (which is what counts) was the same in any case.

I was also diagnosed with late onset asthma at the same time because some of the small airways obstruction is reversible (that’s basically what defines asthma as opposed to COPD), so I take a dual inhaler, which is very common and there are plenty to choose from if one doesn’t do the job. I expect you’ll know more if you can get a consultant appointment.

Musicqueen49 in reply to Superzob1 month ago

Thanks Superzob.Very useful information about 👍👍

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bonny64 in reply to Superzob1 month ago

Hi I was diagnosed with copd in 2016 I think and was seeing nurse once a year but with covid I get a phone call just to see how I’m doing with breathing. After reading most on here today that have had X-rays and ct scans and tests and such like. It says on my medical notes I am moderate but never been told this it seems they don’t give a dam I did have a blue inhaler a couple of times but didn’t really use it always kept busy so you don’t take notice of a bit of short breath any way they’re stopped the inhaler as it’s not on repeat list. I have also seen on my records I have cvd now so now don’t know what aches and pains are related to anymore. Nothing gets explained this is what you’ve got your own fault for smoking and working in motor trade for years. Almost 72 and I feel I don’t pay into the system anymore so tough luck.

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CindyRose1 month ago

I was diagnosed in 2017 ....I was 49 almost 50...I'll be 57 in August....it took 2 CT to finally say I have copd...emphysema..I came home with oxygen on my face and felt like a TV commercial, that I could only go as far as my "line" would...it made me so sick...

I have always been active.... and after feeling sorry for myself for about a day and being bored..and done falling into self pity because I did this to myself by smoking 35 plus years...

I started walking 5 miles a day 1 hour in morning and about 20 ,30 minutes in the evening......I have never stopped..I walk 5 miles a day EVERYDAY SINCE 3 DAYSafter diagnoses...I have not been on oxygen since diagnosis...and not to this day... I was on Anoro and thats it for 4 years..before I felt like it wasn't working or something...I was swithed meds ...have been on Trelegy and that's it..I puff it once in the morning..

You know how you feel better then any Dr..they go by txt book..88 that's the magic number..they say..meanwhile I had cough3d 3 months not knowing and oxygen was 76-80..I went for breathlessness and cough..

I walk every morning before I take my meds for a hour..I check my oxygen as I walk it stays about 93 to 94...then after a hour, I use that thingy they gave me years ago to blow in because I hurt my ribs when younger..spirometer? ..I blow usually a 3500 to 3750 before meds..and most times after in or over the 4000s range...

I never use a rescue inhaler ,nothing..I'm never breathless...I did that test in the beginning and he told me it didn't seem correct to how I manage..

I never had another,nor do I care too...I feel fine ...have been to e.r once in almost 6 years ,and thats when my medication went from Anoro to Treledgy..I do not concentrate on it...we all are different, but never let a Dr define you..they have no clue what you yourself know for a fact..they guide you..I see my Dr once a year , I have to ,just to get a refill for my Treledgy..

I know how it felt to be diagnosed..and all the doom and gloom that comes with it..but once I got mad at myself for even feeling bad for myself ,I took control..they told me to never look it up online because it would upset me..and may not be true...

Anyway...I hope the best for all of us

Musicqueen49 in reply to CindyRose1 month ago

Thanks CindyGreat advice and you are an inspiration. Keep well

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CindyRose in reply to Musicqueen491 month ago

Awe thanks. I hope we all have nothing but good days..or lean on each other for support

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Superzob in reply to Musicqueen491 month ago

CindyRose raises an important point. I didn’t know I had any of these lung conditions until 6 years after I complained about getting incessant winter colds (which turned out to be associated with the late onset asthma and solved by continuing my hay fever spray throughout winter). I generally don’t feel breathless even though I have only 53% lung function, but others who do so often have better theoretical lung function. It is therefore vital that you tell your GP/consultant if your breathing doesn’t feel right, even if the treatment is theoretically correct, because there is considerable individual variation in symptoms and response to treatment.

However, I’m sure with all the advice on here that you won’t have too much trouble

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Musicqueen49 in reply to Superzob1 month ago

Thanks SuperzobThe advice and information on this forum has been fantastic. Supporting each other makes people feel better even before they see any medical specialists. Its a tonic in itself, thanks to you all.

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CindyRose in reply to Superzob29 days ago

Thank you

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Izb11 month ago

I would certpainly take this back to your gp for more information. I was diagnosed and treated for asthma for years before they found out I had bronchiectsis, no wonder the inhalers didnt work. Good luck x

Musicqueen49 in reply to Izb11 month ago

Thanks Izb1

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Italia1 month ago

Hi Musicqueen49. Have you see the COPD patient passport. Might be worth filling it in as it gives some good advice of what treatment you should be receiving. passport.blf.org.uk/

Musicqueen49 in reply to Italia1 month ago

Thanks Italia for advice again. I have completed the patient passport and will be speaking to my GP about the results👍👍👍

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Musicqueen491 month ago

Thanks Italia

Brilliant advice, thanks