Emphysema

[John2309]

Hi all I've been diagnosed with emphasema I am 56 as soon as I found out I quit smoking about 6 months now the specialist gave me spiriva but I'm not feeling any better been the drs but don't seem to be interested it's really getting me down I feel so depressed and don't know where to turn can anyone help me

[Hidden]

Hi John welcome to the group. It's very natural to feel down due to the nature of the condition. It's trying to accept it and how to deal with things that's going to help you move on .It's probably best you go back to your docs and tell them how you feel maybe an antidepressant could help but if you don't want to go that route ask for counsellor referral to talk .or call the blf they have nurses that can do call backs over the phone .I was diagnosed in January this year . I found exercise and change of diet has helped me along the way to being more positive about things xxx

[John2309 in reply to Hidden]

Thanks I just feel like I have been told I have emphysema so they fobbed me of with spririva and that's it oh I've had a blood test for vitamin d ,and got some tablets which the dr said he can't see the point of this as he could test everyone in here and they would be short of it sorry angie for whinging thanks for the reply

[Hidden in reply to John2309]

Your welcome and your not whinging . Your GP is probably not a specialist in the copd umbrella . It's worth you going back ask to be referred to a pulmonary rehabilitation class in your area and maybe suggesting a counsellor it takes a bit of time to adjust to things .but you have done the best positive thing and that's stopping smoking .It's down to exercise diet and steps to feeling positive about things but not all at once do things in your time xx

[John2309 in reply to Hidden]

Thanks angie what's pulmonary rehabilitation? X

[Hidden in reply to John2309]

It's a 6 week course that ppl with lung conditions go on .It's with physios and they teach breathing techniques exercises that you can do to strengthen core muscles. They have chat sessions about various surrounding diet medication . I don't what area your from but some ppl have to wait or others can be accepted pretty quickly .try you tube for breathing exercises x the PR sessions are 2 hours twice a week least that's what they were for me

[John2309 in reply to Hidden]

Thanks angie x

[sassy59]

Hi John, give the BLF helpline a call tomorrow on 03000 030 555. They can offer help and advice. You take care and chat soon. Xxxxx

[John2309 in reply to sassy59]

Thanks sassy I will

[shadow4me]

So many have written about the medics attitude to lung disease on NHS we are one off the worst countries in Europe for treatment second to last I believe ,Well lets be happy that at least we all have the BLF on our side xx

[John2309 in reply to shadow4me]

I didn't know that it's like they look at you and think it's your own fault for smoking do you know a few years ago I got told off for not going the drs he never sees me now I need help they don't want to know

[southcats]

hey John2309 it's absolutely natural to feel freaked and down - i'm 50 and i've been recently diagnosed with emphysema too (end of last year), also taking spiriva... what i found really difficult was getting my head (rather than body, as physical limitations/restrictions/issues are so much more visible, tangible and therefore more manageable) round the fact that a) i'm no longer able to do all of the stuff i used to; b) that my lungs aren't going to magically regrow themselves; c) the visibility of oxygen cylinders (i've been on ambulatory oxygen the last month or so) ie the visibility of my illness... getting your head around it takes a while, it probably never stops, much like so many other things, and that's ok too... pulmonary rehab is incredibly helpful, as it allows you to work out what you can and can't do, and gently push yourself to do that tiny bit more each time... i think these physical stretches mirror the mind stretches too, as you go in with, 'ok i'm ill and i'll never run the marathon but i can do 10 minutes on the rowing machine. go me!' and try and balance the rest of your life around the illness because you are also a brother/son/father/husband/neibhrour...? hope some of this makes sense x

[John2309 in reply to southcats]

Hi southcats

Thanks for replying it does make sense I'm a member of a golf club since being diagnosed I haven't been because I'm scared I won't be able to do it anymore hope I can but I'm not sure

[John2309 in reply to southcats]

I'm also neglecting the people close to me because it's all I think about and what the future has in store for me if any

[southcats in reply to John2309]

i so hear you. i went through that too. the initial shock/rage/grief will go down... i was asking myself the same questions, then thought, hang on, i couldn't tell what the future would be before the diagnosis, so maybe a different question is in order?

[John2309 in reply to southcats]

Thanks your right maybe

[tracyball1 in reply to John2309]

Hi John I'm 42 and also have emphysema I too was terrified about the future, I've made my peace with it now some people have had the disease for many years into their late 70s I think it's different for everyone the main thing is you need to keep as active as possible so don't stop golf you might have to take your time but keep it up, keep exercising just walk loads at least 4 times a day, eat healthy and stay away from things that will irritate and make it worse i.e. people with colds, air fresheners make me weezy, you have done the main thing and stopped smoking. x

[John2309 in reply to tracyball1]

Thanks Tracy it just worries me so much I'm even at the point were I don't want to get up I do but that's how I'm feeling thanks Tracy x

[Hidden]

Sorry to hear about your diagnosis. Do you know your lung function and what stage you are at? If it is the early stages it is very manageable and your life will change very little. If at the later stages then it is more difficult.

Spirva is given because it is a longer acting bronchilator which strengthens your lungs. I didn't feel any different on it either but my doctor explained the purpose of it and said to keep taking it.

[lKeith]

john2309

Hi, don't get downhearted, there are plenty of things out there to research which will keep you busy, give hope and lift you up.

Ther BLF can give you pointers and there is a fellow within the forum (I think his tag is Stone-UK) who has done a lot of research and could give you some links.

Others on the forum have had stem cell treatment ( went to the States) but this is in infant stage but reckons to improve the lung fuction by up to 20%. Otherwise there are Lung valves, Lung coils, treatments offered by mainly London teaching hospitals but you must be refered by your own GP before they will consider you. It may be that you have to consider private treatment.

Start working on it, but try to get/keep fit with Pulmonary rehab courses.

Keith

[Christabella153]

You need to see someone from the Chest Clinic i have had a lot of problems with docs but 1 of my Specialists said Heart tabs I am on dangerous als0 new Pharmacist reported those meds & I wrote a letter so after 5 yrs waiting urgent appointment asked with Cardilogist 5 weeks now! Also yearly blood tests missed been 6 mths waiting & having tests after results for suspected Ovarian Cancer. John you just have to be firm, keep going back & fro to docs try different docs make a nuisance of yourself it is the only way sometimes good luck.

[John2309 in reply to Christabella153]

Thanks for the advice christabel I will keep going can't believe how many nice people are on this forum thought I was alone thanks xx

[Christabella153]

We are never alone always someone here to listen help if possible we all have a moan at times, pass on any helpful tips take care

[revagayle]

Hi John, I hope you are feeling a little better. I am 61 and was formally diagnosed in January ( I should have been diagnosed a year earlier but my primary Dr either didn't see the ct result or decided not to tell me). Anyway I now have a great pulmonologist who is very caring. I was very depressed (still definitely have my sad days) but I am much better. A lot of it has to do with this site & knowing you are not alone. Everyone here has been where you are. Good job no smoking! Exercise is the next best thing you can do for yourself. Take care, Gayle

[John2309 in reply to revagayle]

Thanks Gayle for your kind message

[Curran]

Hi can I ask you a question?

[Curran]

Hi I have just given up smoking after 40 odd years & I have asthma, but my wheezing has got worse.

Can you explain this please ?thank you