I have had Emphysema since my 30s,I am 56 now and suffering like hell!!

I gave up smoking many moons ago.Too little to late.The dreaded disease has ruined my life..I have kept going and have been optimistic up until 6mths ago.I have always been an active person and now I can't walk a few yards..I am awaiting a "lung reduction operation" to give me a better quality of life.I am on numerous drugs,including Morphine,but the other symptoms that go with this disease they don't tell you about is the odema,,exacerbations,anxiety Reflux and the awful depression..If you have copd and smoke give up now ......x

[hopetorun]

Dear Porche296 I can fully understand what you are saying I am 54 diagnosed with COPD in my late 20s I have a small amount of emphysemia still working and doing as much as I can some days are better than others. good luck with the operation. Best wishes Irene

[Hidden in reply to hopetorun]

Aww thank you Irene..How are you coping?Kind regards Laura

[hopetorun in reply to Hidden]

hi Laura I manage quite well really. I have recently reduced my working hours from 30 to 20 which I find better as I am not either asleep or eating when I am not at work! i do go for a swim if I am able once a week and to a health referral class every week. both of which I enjoy. I am hoping to work for an other couple of years but I think that will be all i can manage but we will see. I take pills for depression and acid reflux in the end we take pills to counter act the effects of the pills! I will be speaking to the nurse at the hospital this week as I have been put forward to try the injections for asthma. they are going to have to be really good for me to want to go there every fortnight and have a needle stuck god knows where. Anyway keep in touch if you would like to. best wishes Irene

[Hidden in reply to hopetorun]

Hi again Irene keep working sweetheart that gives you some purpose to keep going! I have just woken up and head straight for nebs before I can have my cuppa.Only last year I was weeding and raking garden.(admittingly hanging on the line post to catch my breathe ) Which I understood exercise good for the lung muscle.I deteriated so quick,scary..I have been on anti/depressents for yrs now and ramprazole for the reflux ,all the effects of the drugs we take..I have just had an enema in musgrove hospital as they were more concerned with my chest being x rayed I had my tum x rayed too and I had a blockage,sounds funny but it reduced me to tears not being able to breathe and not being able to go to toilet..,Once again the effects of the Morphine..Keep in touch Irene and keep smiling sweetie .xxx

[sassy59]

I do feel for you porche296. I care for my hubby who has long term sarcoidosis and now copd, plus a prolapsed disc and he has lots of wheeziness, oedema, exacerbations etc. He gave up smoking over 20 years ago but our son (31) still smokes and I just want him to stop because of the long term health implications. I do wish you well. Take care. xxx

[Hidden in reply to sassy59]

My daughter 25 smokes and have watched me gasping for air..I hope he doesn't smoke around hubby? All the very best to you,kind Regards Laura

[sassy59 in reply to Hidden]

You cannot understand anyone smoking knowing someone in the family is suffering the ill effects. Our son never smokes around Pete. Nobody would dare do that. Take care Laura, Carole xxxx

[Hidden in reply to sassy59]

I have had ppl knock my door with a cigarette in hand!! I have a sign on door no smoking and no colds.All the best to you Carole,God bless xxx

[sassy59 in reply to Hidden]

Incredible! God Bless to you too. Carole xxxxx

[Hidden]

good luck with the lvrs,please come back and let members no how you are after the op,wishing you well,xxx

[Hidden in reply to Hidden]

No date as yet,but will do..Thanks

[Puffthemagicdragon]

Have your doctors suggested endobronchial valves ? The procedure not invasive and is reversible if they don't work.

guidance.nice.org.uk/IPG465

[Hidden]

This was suggested by two meetings they had about me,but decided on the coil as I have severe hetrogenious Emphysema..They are sending me to Brompton London for this as I understand the valves have not always worked..Thank you for the advice much appreciated,Kind Regards Laura

[James48]

Hello Porsche, I share your feelings regarding a ruined life.That's how I feel most of the time.I have emphysema/bronchitis and 28% lung function. luckily I can go to gym and do other things in my life but much more slowly, not for long and it's a real effort. I've had a Pseudomonas infection for 6 weeks that won't budge! I wish you all the best with upcoming treatment. Best wishes, Jim

[Hidden in reply to James48]

Well hello sirjames..I know where your coming from.My lung funcion 27% predicted..I seem to have gone from a strong independant person to a quivering wreck,afraid that I am going to have another exacerbation!I I have to plan my day ahead and life has slowed down to a virtual standstill at times but I always say in my head there are ppl worse off..Poor you,what is pseudomonas infection? Kind regards Keep in touch and let me know how you are...

[James48 in reply to Hidden]

Hello again Porche, Pseudomonas is a bacteria that colonises the lower airways of people and carry toxic materials into lung cells and damage them. It is notoriously difficult to get rid of. The body's response to P. aeruginosa - includes inflammation, which causes repeated exacerbation (flare-ups) or episodes of intense breathing problems. I've just been referred for nebulised antibiotics after 4 lots of tablet form antibiotics have not got rid of it. I'm hoping it will soon be treated and disappear. What a boat we're all in and great to get support from the folk on this site. Best wishes

[Hidden in reply to James48]

Goodness grief,how awful is that for you!! I know how terrifying exacerbations are as I have been admitted numerous times over these past few months..To have what you got must be dreadful and my heart goes out to you..I sincerely hope it will be treated soon .poor you ...Stay strong and fingers crossed this dreaded bacteria disappears for good..Take care Laura...

[ronpeterson]

porche I was able to continue to walk an hour a day every day before and after transplant but very slowly you must walk every day the most you can not necessarily all at once and use plenty of oxygen keep your sats in the 90's if you can I used 6 lpm at transplant the walking prevents infections and the infections destroy your lungs little by little ron [e-mail] regeneratinglungs.com

[Hidden in reply to ronpeterson]

I under stand infections destroy your lungs sweetie,as I had numerous infections before the exacerbations started..I believe that when I moved to a bungalow from a house(as the stairs got too much for me) The damp got to my chest! I have since bought a dehumidifier and do every thing by the book to stay well..Thank you for the advice Ron I will certainly will little by little Thankyou ..

[out-for-lunch]

Hi Porche ........ I couldn't agree more. Both my kids smoke & yet they see me crawling around .... & they know they themselves are high risk because my emphysema COPD is genetic ... I'm A1AD. I hate that they smoke, but what can I do .... I don't want them remembering me as the miserable old git who was always moaning at them.

LVR .... valves vs coils

I had endobronchial valves fitted in 2011 .... they didn't work ..... & I've yet to meet anyone for whom they have worked..

A few months ago Royal Brompton reviewed my files & said I shouldn't have had them fitted & I would've been far better off having coils.

They're willing to remove the valves & fit coils at Brompton, but because the valves are already fitted I'm not eligible for the procedure under the current clinical studies. NICE haven't yet approved coils so I'm in limbo waiting.

Good luck with yours ..... & do let us know how you get on

[Hidden in reply to out-for-lunch]

Its heartbreaking,watching your children smoke and it falls on deaf years! Lung disease does turn us all into depressed miserable gits,I was always called smiler n now that poor woman who cant breathe! I am 56 so I suppose when they say shes young to have that,makes me smile..Lady in chemist asked h ow I stayed so slim..Get Emphysema..lol

On a more serious note,I heard the valves dont always work,and also that some guy actually coughed one up!Have you heard the saying,who shouts loudest!!Keep on at them ,write to anyone who will listen..,I dont know who decides all these things, your more eligible than most if they didnt work! All the very best and I sincerely hope you get approved..

Good luck and keep in touch....