How to deal with diagnosis ?

[Sue02712]

Hi im sue . My partner has been diagnosed with copd been told he has 3-5 years to live . Not sure how we deal with this news .

[Hidden]

Hi sorry to hear this. Who told him he has 3/5 years to live? Unless he is very severe then he has longer than this. No one can put a time limit on copd sufferers as so many even at the extreme stage live for many years.

For proof of this have a look at the British Lung Foundation site also on here. You will hear from loads who are still living good productive lives, so don't give up hope please.

[Sue02712 in reply to Hidden]

Ah thank you for replying it was the lung specialist at the hospital that gave him the 3-5 this was last week so we are still in shock i think . Hes on a strong inhaler theres another then he gets oxygen thats what we been told . Oh and he gotta give up smoking . Hes a truck driver and is away 6 days most weeks .

[Hidden in reply to Sue02712]

I am quite shocked by this as I can't believe a lung specialist could give him such a prognosis.

There are lots of folk on BLF who were 'written off' years ago who are still very much alive and kicking and they are going nowhere soon.

Mind you if he doesn't give up smoking his illness will accelerate so this is essential. Did you get his lung function (FEV1) and stage ie a-d?

[Sue02712 in reply to Hidden]

He hasnt had the lung function test yet thats coming up in the next two weeks he gota have ct scan too . They told him his lungs are stuffed too damaged . Its alot to try take in all at once .

[Hidden in reply to Sue02712]

Well they can't possibly tell how bad he is without the tests so have hope please.

Get yourself on BLF and put your questions in there. It is a very active site with lots of wonderful people.

You will get lots of reassurance in there - trust me.

[Hidden in reply to Hidden]

Just noticed you are from Australia. The BLF site is British but there are other members from all over the world including your country and even as far as Japan and Thailand. Everyone is welcome.

[Sue02712]

Ok thank you very much

[Pantani]

I was first diagnosed in 2005 with COPD and I'm till here. With medication, exercise and a good healthy diet you can live with COPD.

[Hidden in reply to Pantani]

That depends on your level of severity. I am very high moderate even mild and haven't changed since diagnosis 9 years ago. I expect to die with copd, not of it, or even the severe stage. But who knows? It is can be quite unpredictable.

The posters husband sounds like he is at the very severe stage which is a very different kettle of fish.

Also the worse your lungs are the the more infections you get so the damage to your lungs worsens more quickly so it's a vicious circle.

[shadow4me in reply to Hidden]

How can he be working those hours if he is so bad ,I woudnt take no notice and wait and see what further tests say I am severe and I know I coudnt now work xx

[Sue02712]

Hes just been diagnosed but is still going to have some tests in the coming weeks this stronger inhaler is working his symptoms are reduced and is able to get some sleep now .

[Roessner541]

I have very severe COPD they actually wanted to put me on hospice I had part of my lung removed and I am doing much better now I walk everyday and I'm currently weaning myself off oxygen I don't smoke anymore which was a big thing and there are couple of drugs that really helped me from getting exasperations that is NAC and daliresp. I have been feeling a lot better lately and I am very impressed with my own Improvement I still get tired easily but I rest and I'm good to go again. Your partner really needs to quit smoking now there is no question about that because it COPD if you continue smoking will get worse quickly

[valeriejean]

They told me at age 55 I have 2 years to live. That is unless I quit smoking, go to pulmonary rehab and move to a better elevation at sea level. I could hardly take a few steps and at age 66 I get around pretty good, slow but I can do it. I have to wear oxygen in a backpack to get around outside or on a concentrator in the house. He has got to quit smoking or the doctors might be right. He must walk and build up his lungs and strength. Eat healthy, exercise, take nebulizer meds and have a rescue inhaler on hand. I also use a BPAP at night as I quit breathing in my sleep. He can live a good long life if he changes his attitude and lifestyle. Other wise I would make sure you have your papers in order. He has to want to live and make the changes for it to work. Being on the road sucking up car exaust, chemicals, of any kind are very bad for the lung. Best of luck....he can do it!

[Ldycatcoach]

I was given the 3/5 year diagnosis in December 2011. (I am a non- smoker / never smoked sufferer). I did everything possible to make the five year mark - exercised, healthy diet, took my meds exactly as prescribed, took n-acetyl cysteine, monitored my O2 levels, and kept my A1C at 5.4 (Type 2 diabetic - steroid induced). I stayed active with O2 24/7 until my first pneumothorax in July 2016. The second one (more severe) occurred in September 2016. Doctors predictions were right on target, but we were ready. I had my bilateral lung transplant on January 1, 2017 and am recuperating well. I am now continuing to work really hard to honor my donor by taking extreme care of myself. The O2 was swapped for anti-rejection meds and a mask to use in crowds. God has blessed me with a true miracle and I thank him continually for extending my time to be with my family.

[Sue02712]

Ok thank u for your support and advice we are still trying to make sense of it all hes got the champix to quit smoking so we will see how this goes hes a truck driver carting grain in the wheatbelt i make him healthy meals to go away with and he has his ventolins the specialist gave him so far hes managing it .

[Jimbuck]

So sad to receive the news nobody wants to hear. I think the only thing I can say to you is to use this time to make as many lasting memories as you can, focus on the time you do have together and not the time you'll spend apart. Blessings and love to you xx