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Copd

Mummasjred profile image
32 Replies

Hi I've been diagnosed with copd I struggle to walk and collapsed the other day after carrying a few bags from the shop to the car my lung age is 108 last test I'm 41 I've got all my numbers but don't really understand I struggle to do anything and yup guess I'm shocked I lost my son 12 years ago and then my 17 year old daughter (lung condition) 19 months I've tried to stop smoking and back on patches basically I guess I'd like to know how you cope and if anyone can explain my numbers my doc said moderate to severe !! Smoking is must but yes I guess losing my daughter has caused a lot of issues for me so now is the time thank you for reading and I hope some one can shed some light !! Fev1 1.13 litres percent predicated 44% forced capacity 2.55 litres fev1/fvc ratio 44.3 ?? Any help would be much appreciated but please no judgement about smoking x

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Mummasjred
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32 Replies

nobody on here will judge you, I know how it is my lung age is 100ys i'm only 45

cant help with the numbers though im still confused about copd I was told only in December by my gp hospital staff wouldn't comment so am a newbie like you .

sad you lost your son & daughter you will get lots of help on here take care andy

Mummasjred profile image
Mummasjred in reply to

That's what I feel like it's almost no comment attitude no comment on anything 😔 thank u

forgot to say I find that carrying any thing is hard I use buses I don't drive sometimes it feels like i'm carrying a hundred weight on my back take care andy

itsBAme profile image
itsBAme

copd.about.com/od/copdbasic... and no one will judge you on hear,, its not as easy as some make it seem,, we all have been through it,, stop, start, when yer ready you will stop,, the numbers dont make us who we are, just keep active at all times, geting breathless we dont die from it,, we improve, keep active and rest when you need to,, have you been tested for Alpha 1,, some members are,, if you havnt ask yer dc to test you,, and try not to worry we have members on hear over 80 yrs old,, who have had copd decades..

Mummasjred profile image
Mummasjred in reply toitsBAme

Thank you for your reply I'm gonna look at link now all mind boggling 😵 feeling lost

Mummasjred profile image
Mummasjred

Thank u I was worried about posting but I guess Saturday and results pushed me my daughter had cystic fibrosis so I know a lot about lungs and numbers but just not mine almost mind blank xx

itsBAme profile image
itsBAme in reply toMummasjred

its ok dont worry ,, im very sorry about your girl ,also your son, me i cant understand what your going through,, i can imagine though, most on hear have lost loved ones,, but we always never imagine our kids going before us,, im really so sorry,, the numbers take no notice ok,, keep active ,, rest when you need to ok, and see your dc on being tested for Alpha 1,, and the smoking no one will judge you as we dont do that,, all been there and done it,, now just focus on you,, hard as it must still be raw but you will have memories luv, they will always be there, anytime come on hear for a chat,, air your anger its ok, we all do that at some point,, look after you now eh,, you have years yet just dont worry eh,,

Mummasjred profile image
Mummasjred in reply toitsBAme

Thank you it's been tough yes and I know I should of give up years ago I feel so much guilt she had no choice yet I did this to myself !! I don't want sympathy from anyone I guess just nice to know others are going through what I am raggghhh the guilt eats me that's for sure xx thank u xx

Mummasjred profile image
Mummasjred in reply toitsBAme

I remember with my daughter they said take no notice it's how you feel but I feel warn out all the time 😔 thank you for your kind words I can feel I will have lots of support and I'm sure make a lot of friends xx

itsBAme profile image
itsBAme in reply toMummasjred

when your worn out,, have a rest and start again the more you can do it gets better,, try not to think,, O ive got copd O,, yes like thousands world wide have copd,, your not alone ,, keep active is the key and exercise to your limits,, walking dogs is a good exercise uno,, make times to walk them out,, at your pace though, it will get easier uno,, the more you can do the better you will feel ,,

Mummasjred profile image
Mummasjred in reply toitsBAme

Thanku I'm not thinking about it much I'm kinda of very get on with it I guess seeing my daughter suffer so much has hardened me and I guess with her it was similar in doing stuff but she was very sick I'm more angry I let it happen frustration with myself x

grannygrunt profile image
grannygrunt

Hi, I was diagnosed with COPD today, I was told the normal lung capacity for someone of my age should be 452 however it is only 250. Basically I am only able to use just over half of my lungs. I gave up smoking a while ago due to a lung cancer scare and throat cancer scare, it was very difficult after 30 years of the weed. The only advice I can give is to try and get as fit as you can, walking and gym. I was told you can strengthen the muscles around the lungs and heart, that it will help.

I am very sorry to hear about your children, please have a hug from me :)

Mummasjred profile image
Mummasjred in reply togrannygrunt

I will do my best to stop I was going to the gym last year loved it but just couldn't cope body wise I love walking I have 4 dogs but even that is almost no go thank you for the hug great fully received xx

Mummasjred profile image
Mummasjred

I've only told my partner my 2 older girls not my 2 young boys and couple close friends I guess bit freaked and don't want anyone walking on egg shells does that make sense thank u all so much xx so glad I posted now x

camping-girl profile image
camping-girl

Oh love, I don't know what to say! You have been through it :(...., however I do understand the moderate to severe. So I expect you have been prescribed inhalers?...And I'm not going to preach about the smoking as I was a smoker for too many years, been stopped 12 years now but still addicted to nicotine gum....I always say if I'd tried drug's I'd be dead! I'm wondering about your support, do you have a partner or have had grief counselling ? Keep posting, just newish myself however I have had my best information from the lovely people on this site....don't google !

Mummasjred profile image
Mummasjred in reply tocamping-girl

Thank u and yup that would be me the drugs I'd be dead 😂 my girls and partner are great told them we get on and deal my 2 younger boys don't know and the couple of friends said I know where they are I'm not one for for going hey guess what and telling the world it is what it is x none of the family know I kinda feel there's no need but people are starting to ask if I'm ok like with talking I get breathless and my voice has got husky as they say 😂😂 it's all a bit ironic I guess thank u for reply though nice to see I'm not the only newbie xx

casper99 profile image
casper99

Hi mummasjred and welcome to the board. I'm so sorry about the loss of your children, I can't begin to imagine what you've been through. No wonder you've found it hard to stop smoking.

I used an ecig, I'd done it before with patches but not this time.

I had just lost my partner of 32 years quite suddenly and was diagnosed 3 weeks later. I tried patches, gum, lozenges, none of them worked because I was too stressed.

It's been 15 months now although, I do still use the ecig.

Don't beat yourself up over it. You'll only stress more. You'll do it. Just never give up trying. I cut right down to 3 a day for a few days too. It definitely helped make it easier. xx

Mummasjred profile image
Mummasjred in reply tocasper99

Thank u for sharing your story and you know what I'll give that ago I feel so welcome on here I was so scared to post fear of being judged but I feel so glad I posted now xx

paul65 profile image
paul65

hi someone better knowledge than me will answer it for you I am sure.What I can say is please give up smoking NOW and I know it is scary to think of life without cigs in it but you can do it ,after 50+ years of smoking I got rid of what I though was my best friend that was with me when I woke up /every coffee/meal/phone call/drive/going to bed.It took a long time 3 years on gum started on patches when I started thought I would start and smoke again but 1 day went to 2/3/4/5/6/7 I had lasted a week no cigs never before had I managed it and thought lets try 2 weeks and here I am 8 years smoke free all the pain was worth it you will fell great good luck .big hugs x

Mummasjred profile image
Mummasjred in reply topaul65

Thank you for your advice and reply xx

Seaelf profile image
Seaelf

Hello

I won t judge on smoking i ve no right,did for 35 + years. Tried to stop many times but i ll tell you what buckled it. Champix .Why i recomend this so highly is it effectively removes the desire to

smoke now that is precious as much of the struggle is gone.

I ser You have very hard stuff therre to deal with my

heart goes out to you all courage.

Mummasjred profile image
Mummasjred in reply toSeaelf

Thank you xxx

NO judgement lovely - you have a enormous of amount to deal with. So sad for you can only imagine how you are coping. I hope that you are able to get support and help.

I care for my husband who has severe COPD and has had for over 12 years. The good news is - he is still here, still working full time and having a great time (just a bit slower than most others!).

You realise the first thing is the smoking - have you talked to your doctor for help? The next thing is to keep fit - daft as it sounds. There is a pulmonary rehab course - twice a week, two hours a week, one hour monitored exercise and one hour information which was fantastic for my husband. You need a referral from your Doctor - please ask for one.

Are you on any inhalers or medication? The only thing that I have realised is that you have to be proactive and ask your doctor. Please go back and explain how breathless you are and ask what treatments are available.

It might be an idea to ring the helpline - they could advise on what treatment you should expect and receive. You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm.

Take good care of yourself, lots of love TAD xxx

Mummasjred profile image
Mummasjred in reply to

I have the blue and purple inhaler but don't really do much I assumed it was asthma and been getting worse over the last 12 months it was only because I collapsed at home hoovering thought I better go to the doc x thank you for your reply xx

Mini1234 profile image
Mini1234

Hi,

My heart goes out to you my love, and I can't even begin to comprehend what you must be going through. Please go back to your Dr, surely he will pull out all stops to get you the best treatment and support that you need. You still have two young boys at home, and you need to be around to see them grow up. I stopped smoking after 45 years, and enjoyed every fag I had, but they were killing me. It's so so hard,but keep trying love and you will get there in the end. You will get lots of help and advice from people on this site, there are some very knowledgable folk on here who will try and help you every step of the way. God bless you and your family. Mini. Xxx

Mummasjred profile image
Mummasjred in reply toMini1234

Thank you so very much for your reply I'm not gonna give up I'm gonna keep at it even if it takes a bit of time xxx

Mummasjred profile image
Mummasjred

I am interested yes please thank you xx

soulsaver profile image
soulsaver

Your meds don't seem to be controlling your condition - may be worth having them reviewed with yr dr/specialist/ resp nurse.

Have you thought about online shopping if carrying is a problem?

Exercise: Must do - but don't try to do too much at first, build up slowly, ask Dr for referral to Pulmonary Rehab team.

Best wishes

Nanaeal profile image
Nanaeal in reply tosoulsaver

Hi and welcome to our very special band. You have received lots of info and advise. I just want to say stop being so hard on yourself. My daughter died 20 yes ago & it's really hard. I can imagine how you have coped with the death of two children. You will crack the smoking just don't stop experimenting with different ways until you succeed. The best advise I received was read the NICE guidelines make a list of all your questions & then go back to your GP ask all the questions and ask for refferals to a specialist, COPD NURSE specialist & pulmonary rehab. Good luck keep posting Nan

Mummasjred profile image
Mummasjred in reply toNanaeal

Thank u I'm gonna book another appointment xx I'm sorry about your daughter xx

Mummasjred profile image
Mummasjred in reply tosoulsaver

Thank u ill get another appointment xx

Mummasjred profile image
Mummasjred

Hello everyone sorry it's been so long I think a bit of denial kicked in I've been back for second lung function test and it's dropped from 44 to 31 in few months I'm now being referred and also needing a nebuliser as you all know I struggled to stop smoking I don't want sympathy I guess just to know I have people who understand xx

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