Emphysema

[Lovekiss15]

In recent weeks my partner has been diagnosed with emphysema and I don't know where to turn, I'm terrified he's going to die. The 'internet' says to his life expectancy is two/three years. Is this what we can expect ? Am I going to lose him ? I'm clutching at straws here and desperate for reassurance but petrified this post will confirm my worst fears.

[grannybell]

I was told I had the start of emphysema in 2005 and I'm still here. Don't believe everything you read on the Internet. It depends on how you deal with it. Stop smoking, eat well, improve fitness and you have a good chance of living for a good while. I'm not planning on going anywhere soon. Never give up hope and determination to stay well. Good luck. X

[grannybell]

P.S. I was 50 then and I'm 59 now.

[Lovekiss15 in reply to grannybell]

Thank you xx

[Jessy11]

Hello & a very warm welcome to our forum.

You must not believe everything you read on the Internet. One of the worst things to do is to google his condition.

If he smokes he must stop.

He must exercise, eat healthily, take prescribed meds & just get on with his life.

I know it must be a shock but if you need expert advice please phone the BLF who are available for you.

Hope this helps a little 🌹

[Lovekiss15 in reply to Jessy11]

Thank you xx

[stone-UK]

Hi

I am stage four 68 still here, go out every day, still driving , do my own shopping albeit a lot slower, exercise ,good diet no smoking, learn your limitations and don't Google.

Plenty of members on here will answer many of your questions, just ask away.

[Lovekiss15]

Than you, I'm sorry I cant leave better responses to everyone's thoughtful replies but at the moment I'm too upset. It is very much appreciated however, thank you everyone xx

[camping-girl]

Oh Lovekiss,

Please, please don't google...I know it's our first reaction, however my Dad had it & lived over 20 years continuing smoking until he was on oxygen, died in his late 70's ! I have copd now and expect to live many, many more years with a good quality of life. as will your husband x

[VonnyM]

The worst thing to do is read all the stuff you find on the internet.

[Lovekiss15 in reply to VonnyM]

I know, I know I shouldn't and it's the same advice I'd give to anyone myself, thank you for responding xx

[Lovekiss15]

Thank you too nicgum xx

[mmzetor]

nothing I can add that the other members haven't said but welcome to the site

[Lovekiss15 in reply to mmzetor]

I'm glad I joined, what a lovely supportive bunch you are xx

[mmzetor in reply to Lovekiss15]

there is always some one on if you have any questions or any concerns , we discuss all sorts on here not just lung problems ,

[rubyred777]

Hi Lovekiss

Welcome to the site. We're all here for you.😊 You don't say what stage your

Partner is. As you can see by the replies, many members have had copd for many years. Please try to relax, and not Google! Ask us all the questions you want. Maybe you can fill us in more about your partners diagnosis.

Rubyxx 😊

[Lovekiss15 in reply to rubyred777]

We don't know what stage yet, it was discovered by chance when he had a scan. We'll have a clearer idea by the end of the week. At first I wasn't too alarmed as I believed it to be early stage and I know it can be managed. I've become increasingly concerned however about his rapid weight loss and know there's a direct correlation between this and lung function. My fear is that it's too far advanced for it to be managed. He's stopped smoking and I'm hoping this is the reason for his worsening symptoms at present and things will improve once his bodies through withdrawal.

[rubyred777 in reply to Lovekiss15]

Getting to know everyone on the site, and asking questions,

will put your mind at ease.

You can also put emphysema, into the green bar at the top of the page. You will get all kinds of helpful information.

Please keep us informed.😊

Rubyxx 😊 😊

[Swerv]

Hi Lovekiss15

Other members have advised you to stop worrying and i will add my advice to that. Google is our worst/best friend. The important factor at this stage is knowing what his FEV is and what stage.

There is also something you can do to help him. I was diagnosed stage 2 moderate in March 2015 with an FEV of 69%. I started taking cannabis oil early December and on xmas day my FEV was 84%, my oxygen levels were at 98% and i stopped taking meds. I don't take any meds now and last week my oxygen stats were still 98%.

Many people worry about the legality of taking this oil, as far as i am concerned, improving my health is far more important than any archaic law. Governments are fully aware of what this oil can and will do for you, it is legalised in 26 states in USA now, but if legalised in Europe they will lose millions in taxes from Pharmaceutical companies. In America they have started to realise that the loss of tax far outweighs the cost of treatment and by legalising it at least they will make some money from taxation and take it away from the drug dealers.

In the UK, it costs the taxpayers 16bn pounds a year to treat copd patients, every 5th patient admitted to hospital on a DAILY basis is a copd patient.

If you want to do something to help him, go to " treating copd with cannabis oil" on facebook. Join, read the pinned post carefully and then make a decision.

Medication or oil.

Canada has also recently legalised medicinal cannabis oil.

This oil is curing everything from cancer, epilepsy, autism, Alzheimer etc and now copd. For copd is is NOT a cure, the lungs are damaged, so if you decide to go for oil it is a lifetime treatment, with NO side effects.

It is not expensive, around 150 pounds for 6 weeks treatment, or you can grow your own, which i am doing. My cost will be about 50 pounds a month once i start to harvest.

Pharmaceutical medication will not cure him and there are some horrible side effects, especially from steroids, which i took for the first 5 months.

10 months ago i could not walk to my car without being breathless. I now ride my bike several times a week for 25-30 minutes, without being breathless.

BUT, taking the oil on it's own is not the cure. He needs to change his lifestyle. Diet and exercise is the key.

If you want more information email me and i will do what i can to help.

Merv

[LadyoRockee in reply to Swerv]

Mervyn, I would like more information, please!

[Swerv in reply to LadyoRockee]

Hi, as per my post look for "treating copd with cannabis oil" on facebook. Join and then read the pinned post carefully as it will tell you what to do. You can choose to buy the oil or make your own. There is a lot of information in the files section too.

Merv

[Gilly2235 in reply to Swerv]

Hi Merv. I tried to join the "treating COPD with CO group", but it is showing it as a closed group. How do I go about it.

Gill

[Swerv in reply to Gilly2235]

Hi Gill, it is a closed group to protect the privacy of it's members. You just click join as you would on any facebook page and then wait until someone adds you.

Merv

[tracyball1 in reply to Swerv]

Merv I live in Uk and want to try this but no idea where to get it from or how to use it advice would be very much appreciated thanx x

[Swerv in reply to tracyball1]

Go to "treating copd with cannabis oil" on face book. Join and then read the pinned post carefully. It will tell you what to do and who to contact.

I cannot give out this information, this is a closed group.

Merv

[Posative in reply to Swerv]

Hi could you tell me were I can purchase the oil I have I.p.f and very interested in trying the oil.

Thank you condemned

[Swerv in reply to Posative]

Go to 'treating copd with cannabis oil" on facebook. Join, then read the pinned post carefully.

Merv

[Lovekiss15 in reply to Swerv]

I've requested membership on the fb group. I'll email my details to you. Thank you so much xx

[Hometeam2016 in reply to Swerv]

Can I have some info plz

[Dedalus]

Merv, I am not on FB, and don't want to join. Is there any way you could send me the gist of the "treating copd with cannabis oil" per PM?

Many thanks

[Swerv in reply to Dedalus]

Sorry Dedalus i can't. The group is very protective and to obtain the oil you have to follow certain procedures. If i gave out details i would be banned from the group and my supply of oil would be cut off.

You need to open a facebook account, contact the facebook group i gave you, read the pinned post and take it from there.

Sorry i can't be more helpful.

Merv

[Dedalus in reply to Swerv]

No problem Merv - I understand. Thanks for the help.

[Catnip]

RULE ONE -- don't consult "Dr Google". The web will scare you to death.

I was dianosed in 1988, when I was 41. It was a bit of a blow, and yes, I've deteriorated to "very severe" but it's taken 27 years and I'm still here.

My husband is in total denial... That is the hardest thing to deal with. Support your partner, listen to him because he's had a crashing shock too and will be trying to "be brave" for you. Then take the advice of the other posts and that of your medical team -- adapt your lives as the need arrives, and be happy.

Catnip

[Hidden]

A warm welcome from me too. Please don't Google....and don't panic. I know it is so tempting when you are clutching at straws. When I was diagnosed nearly two years ago I hadn't got a clue what was involved and just thought it was part of the ageing process. I had smoked for 50 years and presumed I was paying for it. I did get some advice from the nurse, didn't take it all in of course but I went home, googled everything and everywhere thinking I would improve as I had stopped smoking some years previously. I read a lot of misleading information, and that is the trouble, you have to sort the wheat from the chaff, and you can't if you don't know which is which.

This is the best place to be for help - straight from the horse's mouth so to speak - listen to these amazing people who know first hand about exercise, diet and lifestyle, and don't feel you are dealing with this on your own. I am 76, a widow, and have no intention of giving up.

Fight your corner for your partner - you sometimes have to do this with regards to getting the right and best medication, and don't forget all these amazing people who are on here for you.

[Hidden]

Everyone is saying not to Google. Why not? We're not children. We're adults who need to learn about our lung disease, not hide from it. There are some good medical sites with valuable information to be found on Google. When I was diagnosed I spent most every night for weeks Googling COPD. If I had not done my research I'd still be pretty much in the dark. My philosophy is Know Thine Enemy. I wanted to educate myself about Emphysema. It doesn't take long when researching to learn to sort the wheat from the chaff. I spend time on google almost every day if I want information about any new treatment, trials or medication. Education is the key to managing our COPD effectively. Isn't it said "Knowledge is Power"?

Lovekiss there are four stages of COPD. mild, moderate, severe and very severe. I was diagnosed as severe over eight years ago. I'm still here and live a relatively normal life. I use oxygen only on an as needed basis and I haven't needed it for a few weeks.

I too am a member of 'Treating COPD with Cannabis'. It is a closed group so nothing from the group can be shared outside of the group. Many members wish to remain private and the group respects this. Only members have access to the group.

Your partner needs a spirometry test to establish at what stage he is. His CT scan is showing the state of his lungs, the spirometry will assess his breathing. Will he see a pulmonary specialist.

Best of luck.

[Toci in reply to Hidden]

You said it for me! xx

[2malinka]

Please don't believe the alarmist info on the Net. I have had COPD for about 20 years & I am still here. I live alone and manage to do stuff around the house and drive. Call the BLF Helpline and they will give you proper rational advice.

Take care

Malinka

[Biddy_ALUK Partner British Lung Foundation]

Hi Lovekiss and welcome to the site,

you will get a lot of advice and support from the people on here, and I echo many of them by saying try not to 'Google' and questions you have. I know it's tempting but for every reputable site with accurate information there is one that is not!

You may consider contacting us on the BLF Helpline. We can give information and advice on any aspect of living with a lung condition, whether medical or non medical.

Also, have a look at our website information on how we can support you.

blf.org.uk/Page/Support-and...

Our helpline is open 9-5 Mon-Fri, call us on 03000 030 555

Best regards,

Biddy

[Hidden in reply to Biddy_ALUK]

Yes your site is very helpful Biddy but many of us are not in the UK and do not have access to your Helpline.

Most of the Google sites do give accurate information and we very quickly recognise those that are not legitimate so we close them down and read the helpful websites. Simply put, if they post scare tactics they are not legimate information websites.

If we want a quality all round education about COPD then we need to do quality all round research. Looking at one site doesn't cut it. It's not that easy.

We in Australia have an excellent Lung Foundation but they do not have all the information. That comes with doing a whole lot of research. To rely on just one website is limiting our education.

[doublecee]

Hi, I was diagnosed in 1989 and I'm still around. Just past the big 80 too.

Google is a good reference point to other better informed sites and that's all. Your other half will probably outlive you. Cheers.

[Lovekiss15]

I'm overwhelmed by the response my post has generated. Today has been a very tough day and I was very despondent when I logged on tonight. I was unprepared for the amount of concern, reassurance and support I've received. I can't find the words to express the gratitude I feel, I'm overwhelmed and if I'm honest, this is the second time I've typed this message. I was sniffling so much when I wrote it the first time, my eyes were swimming and I lost the original when I hit the wrong key !

Common sense brought me to the British Lung Foundation site and to my great relief, that's what I've found here. I don't believe I could have found a better group of people and I thank you all from the bottom of my heart x

A1J1S, I couldn't agree with you more. You're all amazing people and I hope I can offer you the same support in return xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

P.s

Swerve

If you'll pardon my French, I couldn't give a rat's arse about the legality of it. I'm with you all the way, I'll be in touch xx

[Louisiana]

I was diagnosed 10 years ago and am still here... in fact, not feeling as bad as I did ten years ago. Try and be positive...if you think he is going to die, he will think he is going to die, which is the worst effect that he could have.

[pianoman]

I have been on oxygen for 8 years. I have about 15% of my lung function left...but I am still going to work 2 days a week. I use a lot of 02, 8ml when walking. But, you just keep going.