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Diagnosed today with COPD emphysema

Python22 profile image
23 Replies

Hi all I'm new here I was only told today I have COPD emphysema. But I'm left totally confused due to I've been discharged from respiratory clinic.

Can I safely assume that any treatment can be done through my local gp surgery, any advice would be greatly received.

Many thanks

God Bless

Ian

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23 Replies
shadow4me profile image
shadow4me

Yes your GP Surgery will see you once a year for a check up ,Normally you dont get to see a specialist again unless you are admitted to hospital xx

Annaline profile image
Annaline in reply to shadow4me

- Fat lot a good

t

stone-UK profile image
stone-UK

Hi

Being discharged just means that particular referral as ended.

Where you given any contact numbers so you can speak to them direct if required. Usually same number that appeared on your appointment form.

Any relevant information will be sent to your GP can take 10/14 days to be entered in you notes.

If a concern give your GP a ring end of next week, he/she may even send for you to attend surgery.

I recently had several sessions, on discharge received letter from GP to discuss the issues that had been raised. Nothing major.

Hey Ian welcome to the forum. Yep treatment from your GP or practise nurse for inhalers and advice . Ask to be put on a Pulmonary rehabilitation class in your area. They will teach exercises nutrition and also have talking sessions where you can learn about your condition. It's all a bit daunting at first but if you need advice on anything ask on here or ring blf helpline xxx good luck xxx

2greys profile image
2greys

It would be so nice if people were given at the very least a sheet of paper giving people the relevant (approved) Web links to learn about what is wrong with them and how to help themselves. Just a single sheet of paper. Think about how much anxiety could be avoided, dare I also say may even save some lives, improve quality of life, SAVE THE NHS MONEY,the list goes on.

Just a single sheet of paper! is that too simple?

Badbessie profile image
Badbessie

Hi and welcome, most people feel a little bit lost at this point.

My first bit of advice is if you smoke give up its the best thing you can do to help your situation.

Next look at your weight being over or under weight will not help your situation.

Thirdly exercise exercise and exercise! Look on YouTube there are some good videos for people with COPD.

Lastly there is no such thing as a daft question. Please if you need help ask. Good luck!

Python22 profile image
Python22 in reply to Badbessie

Hi Bessie firstly can I express my sincere gratitude for the great response to my initial question yesterday I felt alone today I'm part of a family.

I stopped smoking last January after having aneurism clipped after 40 years the easy part was qutting the hardest part dieting, for the latter I'm interacting with the local well being team, the consultant did mention about pulmonary rehabilitation.

Ian

2greys profile image
2greys

There are 100's of, collective, year's worth of members who live with this disease on this forum. Be careful of Dr. Google, there are many sites on the Web that carry, at best, bad information, at worst dangerous, or those that want to take your money.

As Badbessie has said "there is no such thing as a daft question", we have all been there, given an inhaler and left to our own devices. Follow the advice from those that live with it, here, and you won't go far wrong with learning just how to manage your symptoms.

Grayjay profile image
Grayjay

Hi Ian,

Seems like you had the same treatment as I did i.e just left in the dark and to get on with it.

After a while I was sent for for a routine check up, later again saw a respiratory nurse who has put me down for a rehab course, which is finally next week .

So unfortunately it all takes time. There is plenty of info on the internet to read, also this great forum page with nice helpful folk with similar complaints.

It's lousy when you feel abandoned, so I hope you feel a bit better about it soon.

Cheers

Dedalus profile image
Dedalus

Hello and welcome Python

Morning Ian, and welcome. I've learnt more about copd since being a member if this forum than I ever did from my GP and chest nurse. No matter how simple or complicated your questions might be, there is always someone here who will be happy to help.

All the best, Brian

carotopgal profile image
carotopgal

Hi Ian, and welcome to the forum. I totally understand your situation. 20 years ago my husband had a doctor very nonchalantly say "you have a little smoker's emphysema, but nothing to worry about." Gave him no information, meds or anything. So he didn't worry and kept on smoking. Over the next few years, he got worse and decided to quit smoking on his own. But never had a doctor say "you need meds". This went on for years until he got really bad and now is on meds and oxygen 24x7. If he had just had a doctor earlier tell him how serious this all is and put him on meds sooner, maybe he wouldn't be stage 4 now...sigh. Doctors can either make you crazy or be the greatest of help. :-) But you have come to the right place. I've learned more since joining this forum than I've learned from any doctor. Everyone is so helpful and kind. Good luck to you!

hallentine47 profile image
hallentine47

Welcome. I was diagnosed Emphysema/COPD 12 years ago and immediately gave up smoking which I had reduced at that time to 10 or so a day from 60!! There is life after diagnosis and the learning begin and so start with Pulmonary Rehabilitation via your Doctor or respiratory consultant. All the help you need is here just ask. All the best.

Michele-Cat profile image
Michele-Cat

Welcome to the forum Ian. I was diagnosed with emphysema in 2010 when I was 48 and like many others here, received little information or advice from my GP regarding the condition.

I'd encourage you to ask your GP or consultant to put you on a Pulmonary Rehabilitation course. I learnt so much from the nurses and physios about my condition and they gave us lots of useful tips on taking good care of ourselves through diet and exercise. Thanks to them, I've been fortunate to maintain relatively good health and still work full-time.

Emphysema can initially be a scary diagnosis, but this forum has lots of lovely, members always willing to share knowledge and experiences, so don't ever hesitate to ask about anything.

Fionab67 profile image
Fionab67

Hey Ian, I am sorry to hear about your diagnosis, I know how it feels as I was diagnosed in April and it came as a bit of a shock.

This group is full of very helpful information and everyone is so helpful so I hope that it proves as useful for you.

I have seen my doctor a few times since then as well as my practice nurse who continues to hold a wealth of information regarding emphysema so get appointments to see them both and they will put you on the right path.

Welcome!

Fiona

Python22 profile image
Python22 in reply to Fionab67

OK thank you Fiona its ironic but if I had,nt gone to go about memory loss I proberbly wouldn't of stopped smoking. I was sent for a MRI in 2014 and they found 2 aneurisms I had 1 clipped in 2015 but still have one left basicly that gave me the kick up the bum I needed after 40 years of smoking I've been quit now 18mths and in no rush to go back to it.... Lol

Fionab67 profile image
Fionab67 in reply to Python22

Well done on the 18 months! I have up 12 years ago and don't miss it. I had the added smoky atmosphere as I used run pubs when smoking was legal inside. Pity we didn't know the risks back then.

At least you did go to the docs, I'm a believer in fate and that there are reasons for everything we do and that was yours!

Keep strong!

Ttansformer profile image
Ttansformer in reply to Python22

I'm in Australia seems same as you are going through ,I'm 66 emphasemia overlap asthma ,I hate it always exhausted plus bush fires close to where I live ,I don't find any drs IV been too much help ,they just say same thing quit smoking might slow it down , unfortunately smoking is about only thing I can enjoy ,besides what difference would it make quitting?IV cut down a lot ,but it's only thing that relaxes me ,the drs won't even give me any relaxants in case I get addicted it's a bloody joke.

lovejoyliz profile image
lovejoyliz

Hello Ian,

Ask your GP to refer you to a Pulmonary Rehabilitation Program, I can tell you that you would definitely benefit from doing the six week course. Not only that you will meet new friends in the class. I enjoyed going to each one twice a week.

You will also find a lot if online friends here who are ready and willing to help bring your spirits up if you ever feel down, lonely, worried or just plain fed up. There will always be someone here for you.

Stay strong and be positive.

Kind regards

Liz

Python22 profile image
Python22 in reply to lovejoyliz

Hi Liz thank you for those kind words I do live alone and I,ll be honest it scares me. Waiting to see gp on Monday consultant is going to write and get him to book me on a pulmonary rehab course. X

lovejoyliz profile image
lovejoyliz in reply to Python22

Your very welcome Ian, and see you already have 19 new friends in here who have replied to you (smile).

Myself, apart from having COPD, I have had breast cancer and also have other health issues, so I always come in here to look at all the other health issues that members in here may have as I have found some very helpful replies from everyone.

Having COPD can last for years so with the right guidance from your GP and the Pulmonary Class assistants you will be able to manage your condition much better. The best thing that you ever did was to stop smoking and also take care of your diet making sure you eat health foods.

I also have an appointment at another hospital to see a Special Respiratory Physiotherapist who trains in COPD breathing technisques, it is free and is a one on one full hour training, so that is also another thing that you can look into with your GP for referral or even when you go to the Pulmonary Classes as one of these Physiotherapists also makes a visit, so you can also ask about this when you are there.

Let me know how you get on.

Love and Light

Liz

tavymaid profile image
tavymaid

Hi Ian i,m fairly new to this forum and have to say joining here has been brilliant the best thing i,v done since being ill everybody is lovely and helpful and joining stops you feeling like your alone in the world sending love and best wishes xx

Python22 profile image
Python22

Hi tavymaid thank you lim also trying to find out my area has like a help group here in Southsea Hampshire

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