Severe COPD: I have just been diagnosed... - Lung Conditions C...

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Severe COPD

GradmaP profile image
15 Replies

I have just been diagnosed with severe COPD, my lungs only have a 35% capacity and I have to go on oxygen for at least 15 hours a day. I am 69years old, an ex heavy smoker, I'm finding it difficult to find any real information on life expectancy at this stage. Any information would be useful as I live alone at the moment, my daughter is willing to come to live with me, she will be able to take over the tenancy of my home if she is with me for the 12 months before I die.

I'm glad to have found this forum as I have been feeling very alone with this illness that I hadn't heard of before being diagnosed.

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GradmaP profile image
GradmaP
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15 Replies
ck101 profile image
ck101

Have a look at the website of Dr Mahler I just posted, there are some videos also on his site that explain it all. There are a a lot here with less than 35% who are still working and living a full life.

Stay well.

GradmaP profile image
GradmaP in reply tock101

Thank you for replying so quickly, what is the website where I will find Dr. Mahler ?

Hi Well you are not alone any more coz we all understand lung problems here. Welcome to the site. Not being diagnosed until only 35% of lung function left is not good but then again better late than never. You can live with 6% lung function so you are a long way from that.

There are many on here who have the same or even lower lung function and some are even still working. You need to make sure you lead as healthy a lifestyle as possible with exercise and a healthy diet. Make sure you use your meds religiously and take great care of your lungs as exacerbations (worsening of your symptons often caused by a chest infection et.) can further damage your lungs. Seek immediate medical help if you think there is a problem.

Ask your doctor to refer you to PR (pulmunory rehabilitation) which is a group you attend weekly or so for a few months where you can learn exercises tailored to lung sufferers and there is usually a respiratory nurse to give talks and answer questions.

Any problems or anything just come and post in here and we will do our best to help and support you. xx

megannell profile image
megannell

" Awe!..GradmaP..As Our friend Coughalot2 as said to you..Your no longer any need to feel alone...we all know exactly what your feeling and going through right this moment in your life....But!! don't think this horrible disease as the END!..It's just the start of a new journey.... And a new and Yes!.. a different way of doing things... But you can, and will still be able to live as near normal a life as anyone else.. just a little slower is all. it will be hard work at first..i was diagnosed with Stage 4 COPD with just 27% lung capacity, just last year...i instantly gave up smoking and I changed my diet... my attitude..I became much more positive...I watched a lot videos on COPD...But! Only the reputable ones.. i learn't so much from PULMONARY REHAB..Which Coughalot as already mentioned for you to talk to your Dr about...And everyone in here have been like a big big Family... and even better still at the age of 69 i am for the first time in many years....In love...and the both of us are ready to live together and even better we now have someone to grow old with... none this would have probably happened but for all the lovely people in here and dare i say it..COPD...For it made me want to embrace life..and you will too again GradmaP.....Hoping you have a good weekend....x Megan."

megannell profile image
megannell

" GradmaP...I am re.adding this video for you to watch in the hope it may enlighten you a little on how with more knowledge and the more we can learn about this Horrible disease the wiser and the more we can do to help ourselves.... These videos come in part one.. to part four....one link will automatically follow on from the last one..Good luck and Happy viewing....Megan"

healthunlocked.com/blf/post...

megannell profile image
megannell

" GradmaP..Here is another link that may help you with your breathing.....let us know how your getting on as we all support each other so love knowing how we are doing....Have a relaxing if Possible..Weekend.....x Megan."

webmd.com/lung/copd/copd-an...

GradmaP profile image
GradmaP

Thank you all so much for your supportive and positive messages. My name is already down to do the pulmonary rehabilitation course, so I look forward to that. I feel better already !, I have to say that apart from being short of breath I have no other symptoms, I can't remember the last time I had a chest infection, I don't have much of a cough, in fact I didn't have one at all until I started with the medication. So things are not looking too bad now. Thank you xx

cda1947 profile image
cda1947

GrandmaP - I just read your comments. As almost everyone has said - you are not going to die - not yet anyways - you have a very long road ahead of you. For heavens sake - do NOT smoke!!! Glad to hear you gave it up.

I quit 3 years ago in August - and gained about 15 pounds so that is not good - but my breathing is great. Yours will be too.

Take care of you!!

jeanne from Canada

winebuff profile image
winebuff

My capacity is 19% and I have asked the same question. The is no answer as it depends so much on other factors as well. The most important seems to be lifestyle ,eat well,keep as fit as you can,watch your alcohol consumption ,generally don't let it rule you. Keep moving and doing things,you will get out of breath,but you will recover.

Sokrackers profile image
Sokrackers

Hi GranmaP

Last year I was diagnosed stage 3 Copd with 32% age 48

I have just got back from my gym class, huffing and puffing with sweat all over

I am to fight this with all I have

Since my diagnosis I have improved my overall fitness through small steps over the year to reach this point

I now feel fitter and better than I have in years.

PR as many have said is the way forward for advice and exercise.

I remember the times when I couldn't do simple things like the steps in the garden but now I am proud of the things I can do

It has taken effort and determination and I will not.give up

Try to stay positive and every small exercise helps.

We are always here for you

Eat well exercise a little and often and be happy

SK

Offcut profile image
Offcut

Having any condition is like crossing the road look at what and where you are going and you will be fine.

Worrying about dieing will reduce it. As people have said already there are people on here are far worse getting on with there lives without many problems, PMA!

I wake in the morning and look forward to the day.

Be Well

aberdeenman profile image
aberdeenman

Hi although i was told I had suspect copd it wasn't until December last year I found out it was very severe and my fev1 is 18% I still work but just part time now

Tam

FarmerD profile image
FarmerD

Hello GrandmaP,I don,t think you will find the answer to your question " how long will I live? ".nobody knows.With a good diet,plenty exercise,no smoking and avoiding infections you could easily outlive your healthier friends.You are in control not Copd,be positive as much as you can,there is always some one here to chat so don,t feel lonely.Take care D.

💐🌺💐

Bryju124 profile image
Bryju124

Hi, I too last year was diagnosed with severe emphysema and on 15 hrs 4 litres oxygen per day. I was put on azithromycin three times a week, I exercise, walk three miles a day with my dog, take vitamins daily and am so much better, my oxygen reduced to 2 litres and only use it when ambulatory, don't read what it says about life expectancy, I did and panicked, plenty people on this site have had it for years and still rolling along. Wonderful people who helped me realise not the end of the world just different and sometimes a bit slower, keep smiling :)

GradmaP profile image
GradmaP

Thank you for the positive feedback, just this week I found out that it is stage 4, very severe COPD...I also started on my oxygen 2 litres per min for at least 15 hours a day. I've been feeling a bit depressed thinking, if it's stage 4 where can it progress to ?

Does anyone know what all the FEV Spirometry reading are ?

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