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Hi I just joined this site, i found out yesterday my mum has emphysema, im not sure on what stage yet. The doctor wasnt very helpful and sen

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richardcrossroads profile image
richardcrossroads

Hi you need to go onto BLF site and put emphysema in to search and have a look, presumably you have done that.

ask the GP for an AAD am trypsin blood test as this has an effect on you and your family, the GP will explain,

if your mother smokes she needs to stop and she needs to exercise, walking etc.

GP's tend to be bad at explaining, unless you press them so DO

Shell59 profile image
Shell59

Welcome I was told a month ago I have emphysema the doctors don't explain a lot but I have found this sight realy helpful you can ask questions and someone will always reply good luck to ure mum keep us updated on how she's getting on x

hannahmac profile image
hannahmac

You must be worried about you're mum so it is helpful if you can find out as much as possible about the illness.

COPD is the umbrella label that emphysema comes under. In my area (Hampshire) there are all sorts of help available. Rehab classes which involves teaching the patient how best to use their inhalers, exercises to improve mobility, and other self help issues that she can do for herself. People have brought along close relatives, (wives, husband nearest and dearest or children) so if they can't hear very well or don't understand the demonstrations their family can explain later. although they prefer the patient to give up smoking ASAP they do not judge.

I have seen people come out of the class and the first thing they do outside is light up!!

There is mild, moderate and severe with mild/mod, mod/severe etc a long the way.

Can't get rid of it but I can live with it if I follow the programme. Age is big factor. Everybody with or without COPD will lose breathing capacity as they age but I can prevent my mild/moderate condition escalating into severe if I take the treatment. I hope this is helpful All the best to your mum

Good Morning, You must be worried about your Mum. My husband has severe copd and on his diagnosis it was similar, just left with inhalers and that was that. I would suggest as others have that you ring the BLF helpline (click on the red balloon) and get as much information as you can about COPD. As this is a chronic condition there is no medication to make you better but there are a lot of things you can do to keep yourself well and slow down the progression.

The most important thing is to give up smoking, exercise plays a massive part and looking after yourself eg. making sure you have a flu jab, going to the Doctors if you think you are getting a chest infection - not waiting. My husband was referred to a Pulmonary Rehab course - 6/8 weeks; 2 hours twice a week, one hour of exercise and one of information. He found that so helpful and made him realise there are lots of people with similar problems.

Your Mum can continue to have a great life - might be a bit slower but she can! Take good care and get as much information as possible. Take good care, with love TAD xx

worried-wife profile image
worried-wife

By now you will have realised just how many people have lots of different sorts of breathing difficulties. This is a lovely site because there is always such a lot of loving AND helpful comments on it. My husband - aged 85 - was diagnosed a year back and although I don't say much here I read it and know who to contact if I need help. He also did a rehab course which helped us both to cope with things as I was able to attend and ask questions. Good luck xx

vittorio profile image
vittorio

..The trouble using the word "Stage" with any illness indicates to the sufferer that time is running out as the various "Stages" are arrived at and passed - not very encouraging for the patient to, perhaps in their mind, conclude that the "End " is coming . A pal of mine had his Cancer described as " Drawing towards the last stage " THAT WAS THIRTY SIX YEARS AGO - when he was FORTY TWO !!! and he's still going strong. So it follows that the word "Stage" is , as exemplified by my pal's "Progress " of Cancer - is just a matter of opinion, and therefore of little value ! ........like all these figures being banded about associated with lung diseases - at the the of the day its HOW YOU FEEL THAT COUNTS ! - GOOD LUCK ..

longlungs profile image
longlungs

Hello ktwall thought I'd just say welcome to you this is a great site to be involved with already you have been given some really good advice.There is a lot for you take on board at the moment the good people here are a wealth of knowledge and will help in any way we can. :) Remember this is not the end of the world maybe an adjusted way of life meaning maybe a little slower way of living but LIVING and dont forget to smile there are a lot of funny bones here amongst us so make yourself at home very nice to meet you. Janexx

ktwall profile image
ktwall

We are in Australia, my mum is 55 and smokes about 100 smokes a day, she wants to know how to quit and how other heavy smokers quit or replaced the addiction with something else. She weighs 46 kilos and doesn't exercise at all. Is it just a lifestyle change as in quitting smoking and a daily walk to prolong her life or is there much more she has to do? She doesn't get short of breath unless we go for a walk up stairs etc and she has had a persistant cough for the last 2 months that's why we wentt the doctors. I can't imagine not having her around in 2 to 5 years. How long have others lived with this? Thank you all for your replies it really means soooo much.

in reply to ktwall

Hi ktwall, so sorry about your Mum's diagnosis. Quitting Smoking and going for daily walks is going to be a very good start to help slow things right down. If possible the best thing would be to access a pulmonary rehabilitation course where your Mum can learn to manage her illness and prolong lung health. The page links below may help you for local information.

lungfoundation.com.au/

pulmonaryrehab.com.au/index...

If your Mum can achieve smoke free and increase her daily exercise (the PR course can help with that) this will help prolong her life and quality.

Many here have been diagnosed a long time, Myself around 10 years and I am still active, some here have been diagnosed longer still.

I hope some of this information is of help and reassuring to you.

Best wishes to you and your Mum

BC x

ktwall profile image
ktwall in reply to

Thank you, I have arranged for her to start pulmonary rehab in the new year. thanks again

in reply to ktwall

That's great :)

helingmic profile image
helingmic in reply to ktwall

I have lived with my bronchiectasis for 19 years, so far. yes, I had infections, pretty bad ones. I even thought in 2010 that htat was it! But no, the good Lord put in my path a doctpr who gave me two antibiotics which worked like magic.

I'm 65 and I told my consultant I was going to the gym. I went briefly to a convalescent home where after 2 days I had to go back to hospital. In it one of the workers went to the gym I told her that I'd like to do that too. she told me disparagingly, That'll be the day! Yet that day, thank God, has come!

Yes, confidence plays an enormous part in staying the illness.

I'm a book lover, so I can direct you to a lovely little book by Dr Bernard Siegel called "Love, medicine and miracles" who teaches you to have confidence. This is for your mum AND for you, because you both need this. By the way, he is not a quack, he is a really knowledgeable person. His details are on Wikipedia: en.wikipedia.org/wiki/Berni...

OK the quit smoke: there's an e cigarette, which has the nicotine but not the cancer causing tar. That might be a help, because people who crave can have their craving satisfied without the harm.

Phone the BLF helpline to gather some information. Then go to your doctor and ask him to be seen by a consultant, and referred to a pulmonary nurse team. They should be able to help you. Don't be shy, write questions that arise and ask the consultant

You know, I had a father who thought I had learned it all at school. He used to say that I was an idiot when I didn't know something. He used to say that what he knew was common knowledge to everybody. Rubbish! You are on a learning curve here, Ask, read, learn.

Good luck with all this and hey, please tell us more of your mum's progress!

longlungs profile image
longlungs

Hi again ktwall the single best thing your mum can do is stop smoking and exersise plus eat a healthy diet I'm 58 and have lived with the same as your mum for over20years.iam at stage4 now .i stopped smoking 3mths ago this sunday,I had tried and failed many times.the good people on this site helped me this time and they have been outstanding with the support they have given me,and give to everyone who wants ,most people know how difficult a habit it is to stop.I just knew it was my time and felt strong,I used patches and the inhalator , still using the inhalator not the patches anymore.Yoir mum ktwall has to make the decision to stop herself the time has to be right for her,hopefully now is her time eh? I would recommend that anything to do with smoking be removed away and if there are smokers in the house praps they could refrain from smoking around your mum,it really helps if you can't see or smell it .if its around you it makes sense that it would be more difficult not to stay strong.Everyday that passes I get a little stronger.I used to smoked60 aday i feel so very much happier with myself still early days but Im getting there and so are the pennies,a holiday is what I'm wanting to spend my cigie money on! Your mum smoking 100 would save a small fortune that's serious wonga huh lol.there are many things to keep at hand to help those hot moments pass,keeping busy,have fruit,veggies,ice cubes,cleaning your teeth,.My danger zone was the evenings so I would save all my emails from here to answer in the evening so changed my evening habits completely,Ive also bizarrely got back into music which Im very happy about.For the exersise part there isPR ask your doc about it it helps you get exersise for an hour and then discussion on all the ins and outs about our dodgy lungs and how best we can look after ourselves for years and years to come coz I'm damn sure I'm not going anywhere soon lol .So lots to talk about with mum eh.I wish you well and please stay and get involved with us all we are a very friendly bunch of peeps here.See you soon Janexx

in reply to longlungs

Well done longlungs, eye eye Malk.

longlungs profile image
longlungs in reply to

Eye eye Malk haha good to see you how the devil are you? You've bought a big smile to my face thank-you for that.Good isnt it who wouldve believed 3 mths a very good game! :) Janexx

ktwall profile image
ktwall

Thanks guys, all this info is great. What are the inhalers? Many thanks again

How much better do you feel Jane, don't do a daft thing and get a chest cold now now, its so cold at the moment. What's your plans over xmas then?

longlungs profile image
longlungs in reply to

IdoIdo is all good actually I did catch a little bug which was passing Iquickly stamped on it with my rescue antibiotics didnt take the steroids and whoosh it went as quick as it came! Lucky eh? Funny thing is went to my docs re my sleeping habits etc,etc asked for ABs for rescue as shes swanning off to Aussie for 2mths not jealous much :) .Well she said" Jane can I ask you to try not to take the steroids as there is word that it is having detrimental effects with lots of usage?!" Well how funny i thought I havnt told her how many times i havnt taken my steroids A coz I dont like them ,and B when I do get really bad I will stand more of a chance of help as my bods not that used to them my ignorance and stupidity I accept have never been able to take steroidy inhalers,so then they wanted me to take 5mg daily instead ,I took as instructed for maybe a couple of weeks then stopped.and thats how its been for yars and yars now .Im a bit witchy poo sometimes,dont you think thats interesting quite mad? "Jane thats very interesting ?"when she gets back is gonna have a word with whoever about it all coz she said you should be dead Jane "WELL IM NOT YIPPY EYE AYE . Iwould not want anybody who reads this to be influence in any way,we are all very very different every individuals body works differently.Oh god so sorry malk7 a quietish xmas family and grand,children good food nice warm cosy fire and maybe a game of cards and a little gamble only pennies mind the kids can play and we normally have a good laugh with it to,not serious in anyway.Hows about yourself? :) Janexx

ktwall profile image
ktwall

Thank you longlungs I have passed all of this info onto my mum, 3 months smoke free is great! I really hope my mum can do it to. I am expecting my first baby in 4 weeks and my mum will be a grandma for the first time. I cant help crying everytime I look at her and thinking about all the stuff she might miss out on. for the past 6 years I have been her carer as she has depression and anxiety so i have spent every day with her and I cant even begin to imagine her not there. I feel so HELPLESS and angry that this is something i cant fix for her.

longlungs profile image
longlungs in reply to ktwall

Ahh congratulations ktwall I bet your getting large and fed-up and want baby born but terrified at the very thought bless you.Will your mum be at the birth? Hopefully this new precious little person might be the kick you mum needs coz shes gonna need her energy with a little one about.Dont be angry ktwall no you cant change the diagnosis,but you can help and support as you already do and be there and love your mum you are a special daughter indeed already you have organised PR for her thats brilliant hopefully there your mum will make friends with people in the same boat and be able to share their experience of how they manage etc plus the exersise will improve her fitness and the information will be invaluable! Rome wasnt built in a day me darling you have a lot going on already be patient Im positive that your mum has many many years to watch you and your young family grow up really. :) I have to be honest that when I was diagnosed I can remember coming out and thinking s--- do I need a Fag or what!,for others they hear the news and they stop immediately we are all different,I think you have a lot to look forward to try to relax and enjoy your last month being pregnant and have a great xmas try and bring some laughter into your lives,Depression and anxiety kinda goes with the territory hopefully when your mum starts PR this will be addressed.Ive been on nutnut meds for years now and something for moments of panic Im learning to cope much better with that now it does scare the c--- out of you though.But Im here happy and looking forward to hearing from you soon.Is your tummy making really strange shapes now,isnt it completely bonkers to think thats a new life almost cooked and ready to pop,I was lucky to see my first and second grandchildren being born special moments indeed.Sorry to go on so. say hello to your mum. :) Janexx

ktwall profile image
ktwall in reply to longlungs

Yes my belly is huge at the moment, cant wait to meet my lil princess. Mum will be there for the birth and im hoping it will change her thoughts on the situation. Im so glad I have found this site it gives me a little hope. I think I just need time to get my head around things. I told my dad yesterday what was happening and he told me that he thinks he has emphysema as well. Im not as concerned about him though as I am about my mum as he lives a very healthy and activelifestyle and he wont find it as dificult to quit smoking as my mum will. How have your children coped with you being sick? Mum is going to try the e ciggies and Allen carr's easy way to stop smoking cd as well as the medication champix. hopefully all 3 combined with work.

longlungs profile image
longlungs in reply to ktwall

I bet you cant, a little princess eh wonderful :) your mum will be blown away its an amazing time to be part of.I think the timing of everything could be spot on for your mum hopefully all sounding really good.I have 2boys 22&25yrs and a daughter who is now 30,Firstly Ihave to say they have all been brilliant all different like a well balanced diet really they all bring something different to the table im blessed for that.My eldest son needs it all in shorthand if hes unhappy with me i must go to the docs or he will or or or ,I have to be careful how i explain things to him,he knows where we are with this but if he hears any convo in any detail his fingers in ears and lalalaringit,scared he always thinks im not telling him everything,I think where he is scared he doesnt hear properly.My daughter has not been at home now for 10years, she has been there as much as she can is very supportive and has grown enormously the older she gets,although she suffers herself with allsorts she is a very strong young lady and gets stronger daily,Iam utterly impressed with her at this moment in time,she has been brilliant at talking me down when ive panicked last year for 4 days we went to a caking event,I hadnt been out for two years was in a wheelchair and we were trying to travel on the underground in London It was horrendous but she didnt flinch once,she grew,matured and blossomed all at once bless her heart we laughed till we cried.My youngest son has been with me most so has experience more than the others sadley as he's the youngest!But he has a real ability with me when needed, Fortunately there havnt been any nasty dramas as far as infections are concerned for a number of years,He has obviously seen the decline as have the others but he is with me most days.Iwas a very strong person could lift and shift most things,so there are noticeable changes he now carries my handbag upstairs for me.At the end of the day ktwall we are family and we love each other and support the best we can none of us are perfect,I know my kids wished Id given the cigs the heave ho way back,annoyingly I didnt,Im lucky we move on withit maybe because all three of them smoke maybe they understand more because of their own addictions.But its now 3 mths and Im determined never again!! So there you have it,Im sure there are a hundred other stories here that will be of help also to you everybody here has been brilliant so glad like yourself to find it,ive only been here since aug/sept takecare now :) Janexx

ktwall profile image
ktwall

I have been looking into alternate natural ways to help, has anyone tried any of the following with any success?

Breathing collodial silver through a nebulizer

Taking Serrapeptase along with Iodine

Liquid vitamin A (retinoic acid)

Salt caves

MSM

Diet and lifestyle program by Robert Redfern

Stem Cell Transfers

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