COPD stage 4 and what it means...

[Suzym2u]

yesterday a close relative of ours has just been diagnosed with COPD Stage 4 and is to receive end of life care. She was a very heavy smoker until about 3 years ago and was finally persuaded to give up. we have knowledge of COPD but not what 'end of life care' means. As you can imagine her children are in shock as they had not realised she was so ill.

[Puffthemagicdragon]

I was diagnosed Stage 4 just over 3 years ago. I haven't deteriorated since. There are quite a lot of us on here at Stage 4.

They can ask me about " end of life care " in about 30 years time when I reach 90.

Has the person had proper tests by a pulmonary consultant ? What treatment are they receiving ?

[Suzym2u in reply to Puffthemagicdragon]

I am not sure at this present moment but we will try and find out, thank you for your reply so quickly

Susan

[Sohara in reply to Suzym2u]

I am stage 4 too...I am certainly NOWHERE near 'end of life stage' my lungs may be...but I am not

I am still active , and have many more years left in me

[O2Trees in reply to Sohara]

You too Sohara and having met you, i can vouch for your activity. Very impressive and gives hope to others.

[HelenAlora in reply to Sohara]

this is the first very positive thing i have head read - just diagnosed, not sure what stage yet, but so good to hear the disease doesn't always continually worsen. thank you

[Sohara in reply to HelenAlora]

That post was 5 years ago & I am still going strong !!! look after yourself, stay clear of colds etc . EXERCISE a short walk each day is the best , no way is stage 4 a death sentence

[O2Trees in reply to Puffthemagicdragon]

I was hoping you'd be on to this Puff, you're a Stage 4 poster boy!

[yorkie70]

Hi I was confirmed stage 4 more than 10 yrs ago I am still active, do not use oxygen. My sats at rest are +/_ 94 %. I am coming to 71 yrs young and have a long way to go. My favourite sayings are " I have emphysema but emphysema does not have me" and " I do not have a sell by date like a packet of frozen peas". Suzym2u a full pulmonary test is the only way to get a true picture of condition. Breath easy and exercise as often as possible.

Dave from the LoS.

[Hidden]

Good Morning, I care for my husband who has severe COPD with a lung function of 27%. He was diagnosed about 12 years ago but I have to say that for the last few years he has not worsened at all. I would advise you to ring the BLF helpline, they have some very useful literature which will help the family understand. Over the years I have found that I needed to be proactive with our healthcare team and wrote a letter to the gp surgery so that they will talk to me about my husbands health - I have found this particularly useful when he is ill.

So many things I want to write down - but I will try to keep this simple. My husband still works full time, we still have a great quality of life just quite a bit slower! He uses oxygen for exercise especially in this cold weather and we have invested in a scooter so that he can go around the big shopping centres etc.

About four years ago he went on his first pulmonary rehab course - six weeks, two hours a week, of one hour monitored exercise and one hour information. I think it gave him his life back! You need to get a referral from the doctor but invaluable.

The most important factor is to give up smoking - which your relative has so no further damage will be done. Colds can be a nightmare as they can lead to chest infections - I would advise as soon as your relative thinks that his/her breathing is worse or has an infection - go to the doctor and get some antibiotics. There are lots of medications available which should help.

After all that - with the right medical help and support I am sure your relative can have a great quality of life for some time to come. Lots of love TAD xxx

[Offcut]

A lot more information needs to be found before anyone can give an answer to that one. One of my conditions, if you look on the interweb gives me 3 years I have no idea how long I have had it but was diagnosed over 2 years ago. Believe me I am not looking to go for a long time.

Be Well

[onamission in reply to Offcut]

Glad to hear it offcut as you all know I'm going to live till the grand age of 140 and then I'm coming back to haunt the MP's at number 10

[Offcut in reply to onamission]

I will join you then

[ANDREA-JOY in reply to onamission]

I'll be with you

[caz1988]

Hi I have less than 20% lung function but I'm not on oxygen ( yet) my levels are always good unless I have an infection, I have an Impact Nurse comes in once a month to check my blood pressure and how well I am, normally they are end of life care nurses but I'm going nowhere for as long as I can help it. I'm awaiting news to find out if I will get a lung transplant. It's a long game but I'm playing to the end. Regards Caz x

[Hidden]

Heavens...I've been stage 4 for the last three years and I'm still breathing! And have no intention of going anywhere yet...far too much to do...lol

[Suzym2u]

Liz was diagnosed about 6 years ago, gave up smoking about 3 years ago although I believe she had cut down considerably before then. She now has oxygen 14/15 hours a day but not at night. The district nurse is calling in every other day starting this week. We have contacted the BLF website and ordered some information. Thank you so much for all your replies.

Susan

[Louisiana]

What a shock for you and your family to hear that phrase. BUT you are going to get loads and loads of posts on here telling you that no matter what stage we are at, or have been, we are still going strong and living our lives as best we can, with no thoughts of going anywhere at the moment (at least I have no thoughts along those lines and I smoked for 51 years - naughty naughty ) Do try and speak to a BLF nurse and do stay on this site as you will learn a lot from it....also have you all spoken to the doctor, nurse, surgery, and written all your questions down before you go so you don't forget anything....keep posting, keep asking, and tell your relative about us!! All the very best to you all.

[Hidden]

according to my specialist they are no longer classifying COPD on scales of 1-4 or 1-5 just in percentages mine at 32% is classed as severe.