Help me help my wife. Emphysema - Lung Conditions C...

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Help me help my wife. Emphysema

Jerryt360 profile image
26 Replies

My wife (56) was diagnosed with slight to moderate emphysema 6 months ago after getting a CT scan. She blood work that caused her doctor some concern. She smoked since she was 16, but we quit together 6 weeks ago. We do not know what stage she is in yet because she had not seen a pulmonary specialist yet. She is trying to stay positive but most of the time she is depressed. I keep trying to get her to make an appointment so she can get treatment her reply is "why? I only have 2 to 5 years to live anyway". I'm trying to convince her that's most likely later stage diagnosis.

She has a slight cough sometimes but no noticeable shortness of breath. I'm pretty sure her being upset and crying all the time is not helping her condition.

If you can share your experience to help me convince her that it's not necessarily a death sentence it sure would help her.

I don't know what to say and I end up making thing worse and making her upset. Please help

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Jerryt360 profile image
Jerryt360
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26 Replies
sassy59 profile image
sassy59

Welcome to the forum Jerry where you’ll find a wealth of experience and advice. It’s a shock to be diagnosed with COPD (emphysema) takes some living with but living with lung disease is something the great people on here do every day. Well done on both quitting smoking.

I’m carer for my husband of nearly 48 years. Pete has COPD (chronic bronchitis), sarcoidosis, heart disease and chronic back problems. I make sure he eats well, has plenty of fluids and gets some exercise. He does what he can, when he can. Medication helps too of course.

I hope you’re wife makes an appointment with a specialist and doesn’t focus on just being around for 2-5 years. Pete has already lived for 11 years since his diagnosis and many have lived even longer.

I do wish you and your wife well. Stay strong together and we’re here for you. Xxxx

Jerryt360 profile image
Jerryt360 in reply to sassy59

Thank you so much. Your reply means the world to me. Positive reply like this is what I need to share with her. Thanks again Jerry

Gladwyn profile image
Gladwyn in reply to Jerryt360

I was diagnosed about 30 years ago. She has a long time to go yet before she leaves this mortal coil with COPD. Do tell her to relax, the fact you’ve both stopped smoking has already given her a lot more years. Hear what others on this forum tell you and take heart from their stories. Best wishes to you both 😃

CDPO16 profile image
CDPO16

Hi Jerry and welcome. I'm sorry that your wife has reacted in this way to her diagnosis. None of us know how long we will live but while emphysema is a progressive disease it isn't a death sentence within a short period of time when at a moderate stage. I was diagnosed with moderate emphysema in 2014 and, while I have worsened since then, I'm not dead yet!With treatment, healthy diet and exercise the progression can be slowed and many live far longer than your wife expects too and many have lived much longer than me with the disease.

I do sympathise with your situation but I'm not sure that talking to her will help right now. Maybe she will have a different outlook when she has seen the specialist. In the meantime, congratulations to you both for stopping smoking. Best wishes to you both, keep in touch.

Jerryt360 profile image
Jerryt360 in reply to CDPO16

Thank you for your reply. I feel bad for everyone with lung disease. My wife and I both watched my father die from emphysema, they caught his in the later stages and he didn't quit smoking. He made it 4 years and it was bad. I'm sure seeing him die is making it harder on her.

peege profile image
peege in reply to Jerryt360

Ah there's your answer. Your father was diagnosed in later stages, didn't stop smoking and only lasted 4 years. You wife is now mild or possibly moderate which she can change with gently beginning exercise, a healthy weight, healthy diet and continuing with hand washing and avoiding germs/viruses (many many members have done this fir years, long before covid because we want to avoid getting any infection).I suspect the withdrawal from quitting might be part of your wife's depression, 40 years of smoking has got will take awhike to get out of the system. I wish I could help more. Perhaps continuing with your understanding and kindness for a bit longer until she agrees to see the specialist who will give her the right medication to give her many many happy years. For sure she'll get worse without specialist support. I have asthma, use an inhaler daily, a medication to help keep my lungs clear and have done for years. Without them I wouldn't be able to chase around with my little grandchildren.

Most folks there with copd will tell you you can't die of it, something else will finish you off. Several members in their 80s.

Wishing the best for you both , more people with copd will be along to offer better advice than I. Peege

Jerryt360 profile image
Jerryt360 in reply to peege

I keep reminding her that they cought hers early. Just going to stay positive. It's hurts so bad to seeing her so depressed. I'm sure she will get through it, but it sucks. Thank you for your support 🙏

skischool profile image
skischool in reply to Jerryt360

By quitting smoking which you have both done and doing it together although still hard you are already on a winning streak.Emphysema is a diagnosis of the damage already done,if it is mild to moderate then by adopting a healthy lifestyle there is no reason why your wife could not live almost as long as a normal healthy person and that must be your goal.

Forget all that you or she may have read on the internet as it is wildy inaccurate and many members here are testament that you cam live to a ripe old age.

Now go on and live that long life,enjoy it together and never forget we have members on here with a wealth of experience to help you do so.

Best wishes

Ski's and Scruff's

CDPO16 profile image
CDPO16 in reply to Jerryt360

No doubt at all that watching your father's situation has had a huge and upsetting impact on both of you. You did point out however that he was diagnosed at a late stage and that he didn't stop smoking. You have both stopped which is the best thing you could have done, added to the fact that your wife has been diagnosed at a much earlier stage. That also is in her favour in that it can now be addressed and treated to help to keep it under control.I hope the replies you have received will go someway to reassuring you both even though I do understand how distressing it is for both of you. We have all been there and found our way through. I for one have found this forum to be a great source of support and I hope that you will too.

Annie31 profile image
Annie31

I echo everything Ski's has said and it has been said that you will die with COPD not of it!

hypercat54 profile image
hypercat54

Hi I was diagnosed with mild copd 12 years ago and the doctor told me I would die of old age before the copd got me! I was in my 50's at the time.

Lemon7 profile image
Lemon7

I was devastated when diagnosed with mild copd. I didn't think I would die but was worried about deteriorating rapidly and losing quality of life. Over 2 years later I haven't noticed any change or worsening of my condition. People on this site reassured me about my worries. Lots of good advice to keep as well possible. Eventually i realised it wasn't all doom any felt much more positive. The best thing, not smoking, you are already sorting. When your wife overcomes the initial shock and comes to terms with diagnosis she may feel better about it all, i do hope so. Then all good advice from folk here will help, prompt treatment for chest infections, pneumonia and flu jabs etc. Healthy weight and healthy eating to help immune system. Regular exercise, pulmonary rehab course perhaps. I'm new here but lots of others can give advice and encouragement. The nurses at BLF can speak to you as well with this. Hopefully soon your wife will feel better about it all. Sending very best wishes to you both.

Patk1 profile image
Patk1

You've done well to support her and both stopping smoking.there r a lot of people on here who can help and advise u.keep up the gd work of supporting her.she should go see gp both about depression and diagnosis

Hi and welcome 😁They are a great bunch on here looks like most of the experts have spoken all ready 😂

I rely on this group more that my own drs as we are all in a similar situation, firstly only use the nhs website it’s good to be clued up but don’t go over board, secondly I was diagnosed at 27 with emphysema then went on to have another baby thought I was gonna give birth to a lung 🫁🤣 but I’m still here and to be honest not much of my life has changed I’m just a bit slower and avoid certain things which I know will set me off, being diagnosed can be scary and I guess seeing a family member suffer has made you think the worst but it is really NOT all bad! Stopping smoking does give you extra years (my self being an ex smoker of 15 yrs) keep us all updated and remember things are never as bad as they first seem once you have digested it you see it in a different light.

All the best

garshe profile image
garshe

I was diagnosed with Severe COPD 11yrs ago. Really scary at first but then you realise there are many worse off. COPD is not Terminal its Progressive. You contral how fast this happens and can slow it down. Your wife should contact her Respiratory team, they are very knowledgeable. Arrange to go on a Pulmonary Rehab Course where they teach you how to control your symptoms. Good luck .Sheila.

2greys profile image
2greys

"I only have 2 to 5 years to live anyway" I must have taken a wrong turn somewhere, I was diagnosed with Severe Emphysema in 2016 and still going strong. Strong enough to have kicked lung cancer into touch and kicked Covid where it hurts since getting that diagnosis.

Tell her to leave 'Dr Google' alone, his pages often behave as a charlatan. Some of Dr Google's pages will also try to sell you 'Snake Oil' as well and happily take your money. Listen instead to those that have lived with this disease, daily, for many years.

Until Covid arrived I was still working full time, on my feet all day, Taking my family on sailing holidays, skippering a 15 ton sailing cruiser. I'm not exactly a spring chicken either at 71 years. A good quality of life with Emphysema is still very achievable, whilst having a good state of mind.

johnderby profile image
johnderby

I echo everything the others have said to you. With just a few changes your wife can have mnay years to look forward to. Good luck to you both. John

Alberta56 profile image
Alberta56

It's good you've stopped smoking. You deserve some treats for that. But don't eat too many cream cakes, unless you go exercising to get the calories off. I have bronchiectasis, not emphysema, but my late father had emphysema. He was a builder by trade and worked on many mucky jobs. He also smoked all his life. In his early 70ies he started to have breathing difficulties. I was relieved when he was diagnosed with emphysema, because I thought it was lung cancer. He received very little medical help in those days (the 70ies) not even an inhaler. He tried to give up smoking, but never really succeeded. But he soldiered on till he was 83 or 4. He was a determined old ******.Went into a care home for the last couple of years of his life, but independent up till then. If my old man could manage 12 or more years of living with emphysema, your wife should be able to do much better than that. Best wishes to both of you. I hope she will feel up to seeking medical help soon. She will find that there are ways of keeping the condition under control. xxxx

bwp91 profile image
bwp91

Have you looked at the BLF website? Lots of good info there and it might help to phone the Helpline and talk. Join a Breathe Easy Group if there’s one near to you. And look after yourselves as people have described. There’s plenty of life after diagnosis. Good luck!

ninelives profile image
ninelives

Can't really add to the helpful posts on here !Well done for quitting smoking both of you and agree with others that quitting smoking plus the shock of the diagnosis may have contributed to her feeling down.

The only other thing I would add is to take care of YOU as well as your wife.

Don't cut yourself off from friends your normal routine etc.

You are clearly an amazing support to your wife.Thinking of you both

Snackjack profile image
Snackjack

I can't really add much to what the others have replied to your post. I was diagnosed in 2016 with early stage Emphysema and Lung Cancer, initially I thought that was it, my life was over, I reached out for help and a very nice lady from Family Liason at our local Hospice came once a week to talk to me, in time she persuaded me to join a local coffee morning group and for me that was the start of me accepting that my life wasn't over. In March 2017 I had a the upper lobe of my right lung removed due to the Lung Cancer, still got Emphysema in what is left of my lungs, about 2 weeks after that I was rushed to hospital, I had Sepsis then in the November 2017 I was in hospital again for a double incisional hernia operation and whilst In hospital I got hospital acquired pneumonia, following year diagnosed with Colitis, all of this whilst already been diagnosed with Ischaemic heart disease with LV impairment years before. Have not told you this as though it is some sort of competition but to hopefully help your wife understand that her life will not be all doom and gloom. Like 2greys said don't go to Dr Google, I did initially (against the advice of my GP and consultant) and had Dr Google been correct I should not still be here. Perhaps a good idea to persuade her to speak to her doctor or consultant about how she is feeling. Lots of really nice people on this site whenever you want to have a chat. I wish you both all the best xx

burke1966 profile image
burke1966

I done the same thing I cryed for 2 weeks or longer.Sweety its not a dealth sentence.You can live 10 to 20 years in last stage thats where i was when i got diagnose..I am 54.

pasquino profile image
pasquino

Hello,I'm sorry what is happening to your wife, but you can tell her that if she still has no shortness of breath at rest or when she walks short distances her COPD is not of concern.

I had a lung removed when I was 67, now I'm 70, the remaining lung has COPD and a little fibrosis, yet I go on through ups and downs leading an almost normal life.

He also reminds your wife that research on stem cell treatment for COPD is on track and it is assumed that treatment may be available that will REGENERATE damaged lung tissue.

Find out online, but beware of doctors who say they treat with stem cells, since the treatments have not yet been approved but only in the trial phase.

It is expected that within 3/5 years a definitive cure will be possible to be carried out once and for all, without surgery but only with an inhalation of stem cells.

Tell her to get plenty of exercise, healty diet and rest .... and be positive!

Best wishes,

Mario,

CaptainPugwash profile image
CaptainPugwash

Welcome Jerry I’m So Sorry To Hear About Your Wife I Was Diagnosed 14 Years Ago When. I Was 41 .. Eat Healthy And Exercise Does Wanders You Both Have Given Up Smoking So That Will Be Much Better For Her And You ..

it’s Not A Life Sentence You Can Live For Many Years With COPD . Your Wife Sounds Depressed So May Be She Needs To Speak With The Dr .. Keep Positive Take Care Keep Safe 🖤🖤

Solily profile image
Solily

I was diagnosed with mild COPD 6 months ago. I felt this was the end of my active life. I became quite down in the dumps and not caring about life. I joined this forum and so many wonderful people to chat with and so much support. And the humor is great!!! It makes me laugh and feel alive again. After an extended consult with my pulmonary doctor.... and reading others posts on this forum I realized I have a lot of life to live and I can live a full life. Please let you wife know she can live a full life!! And she is so blessed to have such a caring husband!!! Hopefully your wonderful support and a chat with her doctor will help calm her fears.

Ergendl profile image
Ergendl

Hi, Jerryt360. I was diagnosed with moderate emphysema in 2015, 6 years ago. By following all the tips on here about living more healthily, I improved my readings so that I come in at the bottom end of normal now. That doesn't mean I no longer have lung problems, just that they don't usually cause me too many problems.

Although my diagnosis was a bit of a downer, it didn't depress me the way it has your wife. I had cared for my second husband who had had lung problems diagnosed in 1989 and lived to 2003, 14 years after diagnosis. Because he continued to smoke, he was quite severely disabled by the end, so you've done the right thing in giving up the fags.

I decided to live life a lot more and die with COPD, not of COPD.

Wishing you all the best.

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