I have Emphysema ,and I am new on here, i need Help ,my english is not to good , I come from Germany

I have Emphysema ,and I am new on here, i need Help ,my english is not to good , I come from Germany

I am very dump comes to this Copd or Emphysema ,i just know i have a hard time breathing even with Supplemental Oxygen I am sitting i have my Oxygen on 2/3 when walking on 5 L,, but it seames when i put it up on 5 my breathing gets worse , I hate this SOB , i was a smoker for 40 years , quitt 2 years and 6 month , after i got Diagnosed ,my doctor say i am stage 3 .. don't know what that mean , how long i have to live ,i am so depressed and furries with myself ,that i ever smoked ,i want yo be in your conversationes and please give some advice , how to deal with that Breathlessness , please respond ,,,thank you

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  • nice to have you with us, at stage 3 I,d say you have a long time yet, im stage 2,we have members at different stages and there all ok,also members on oxygen who will respond to you,the forum is open 24/7, post any questions you have ,and members will do there best to help and advice you of any concerns you have, the british lung foundation is open Monday to Friday 10a, m,if you ring Monday 10 a,m,a blf nurse will help and guide you through any concerns you have,the number is, 03000,030,555, I don't no the code from Germany but other members will be along and help you,stay with us and don't worry,xxx

  • Good to hear from you germany 1950. Sorry you are feeling depressed happens to us all. Keep looking in here there are many who will help you. It is a lovely friendly forum.

  • Thank you so much , yes i am from Germany , but live now in Colorado ,i been clicken true the internet and i found HealthUnlocked , I was so suprised ,how nice People on here are ,so caring ,thank you Renate

  • any concerns you have renate please tell the members as some are on oxygen and will help you ,im not on oxygen ,try to stay calm as that will help you with your breathing, some members will post breathing videos for you,stay with us,xxx

  • Ooh .... Colorado. Great place. Spent time there in the mid-70's

  • A very warm welcome to you Renate. Love cx

  • Hello germany1950 - welcome! I care for my husband who has severe COPD and lung function of 25% having said that he still works full time, we still have a great life just a bit slower than most! He has oxygen for walking etc.

    Firstly I think you need to back to your doctors and explain about the oxygen. It was explained to us that sometimes it does not help with breathlessness but makes sure your organs are staying healthy. However it should not make your breathing worse. Perhaps you need another oxygen assessment.

    Each patient is different, each patient has to become an expert patient by listening to their bodies, learning what triggers an exacerbation or makes you more breathless or starts the coughing and to keep asking the doctors. If you don't feel right go back to the GP - our lovely doctor agrees that my husband and I know more about his illness than she does.

    If you have been diagnosed please talk to the BLF helpline and ask questions of your gp and nurses. If you think the medicines aren't helping go back and ask them to be changed. Come on here and ask questions. If you don't feel well ask for advise. These would be my top tips:-

    1) Stop smoking - you've don that!! Brilliant

    2) Keep fit - ask for a referral to pulmonary rehab. from your doctor/nurse and keep asking!

    3) Get a flu jab

    4) Get a pneumonia jab

    5) If you think you are starting with an infection - go to the doctors don't wait

    6) Take your meds. If you are having side effects go back to the doctors, if they aren't working how you hoped - go back and ask. There are lots of meds available.

    7) Listen to your own body and learn - you will know best

    AND

    8) ENJOY YOUR LIFE - things may change and alter but they would anyway - enjoy each day. The good memories will keep you going when things aren't as good!

    I also think you need help with your mood my husband has just been given an antidepressant because he gets panic attacks when he can't breath. These seem to be helping.

    The best of luck - I think that you will be able to get help but you must Ask for it!

    Take good care, TAD xx

    PS RIng the BLF helpline - click on the red balloon in the corner, they have some fantastic leaflets

  • well actually, if Renate is a retainer then oxygen can make her feel breathless ......

  • Hello and welcome.

    I'm very glad you found our site. You've been given some great advice, this illness can make you feel very depressed and lonely, but everyone on here are very nice so I hope you can start making lots of friends that will help you to feel better.

    Kim

  • Hello and welcome germany1950. Well done for giving up smoking. The next best thing is try and keep active. I am at Stage 4. I still get around ok. Maybe you should get your oxygen tested again by the nurses. Try and not let mucus stay on your lungs. Avoid infections and you can be around for a few years yet. Some members here have had COPD for 20 years and are still going strong.

    I hope this works with Google translate .

    Hallo und herzlich willkommen germany1950. Gut für das Rauchen aufzug getan. Die zweitbeste Lösung ist, zu versuchen und aktiv zu halten. Ich bin bei Stufe 4. Habe ich noch umgehen ok. Vielleicht sollten Sie bekommen Ihre Sauerstoff wieder von den Krankenschwestern getestet. Versuchen Sie, und nicht zulassen, Schleim Aufenthalt auf Lunge. Vermeiden Sie Infektionen, und Sie können es schon seit ein paar Jahren noch werden. Einige Mitglieder hier haben COPD seit 20 Jahren und sind immer noch stark.

  • Hi Renate nice to meet you,well done for finding us ,this is a great friendly site with so much information on varying lung issues we support and care about each other,we learn we listen and we laugh.It is never easy being told you have a long term health problem,but things will feel easier as you get used to it.We cant change our past habits so try not to beat yourself up over it,so many of us are in that same boat wishing we had stopped smoking sooner or never started at all,but we did smoke! You have now stopped which is brilliant.Tadaw has said everything in a nutshell excellent advice.Hope you now stay with us and we can get to know you better.Keep well :) Janexx

  • Hi Renate and welcome to the site nice to meet you. Your English is very good. I can't add to the advice you have been given but stick with us and we will help you all we can. As you have seen we are a very friendly bunch who support and help each other. Any worries just come in and we will do our best. xx

  • hi renate, its nice to have you on the site, i think you are like most of us,,, furious at ever smoking, i am at stage 4, which is often called "end stage" i prefer to call it stage 4, as "end stage" can often be mis-leading, i intend to go on a long time yet, i am also on oxygen, which really should help, if it is not helping, see your doctor right away,

    i think tadow has given the right advise in his/her post, along with the others off course, try to keep as calm as possible, sometimes easier said than done, but you can learn to do this, you take care now, and keep in touch, kindest regards,,,jimmy.

    p,s your english is better than my german, after trying to read puffs translation:)

  • Thank you all ,,for your sweet welcome , i will go in details tomorow , i want you all to know ,what is really going on , sometimes i feel like a Lab rat ,dragen a 50 foot hose around 24/7 .and my Doctor keep on changing my Meds ,i done good for 2 years .until he exspirenced new drugs on me, now i am going down hill , in the morning i wake up .not even my feet touched the ground , my Oxygen level sinks to 59.I have a oxygen reader ,i do Lip breathing and it comes back to 92 , my doctor told me he dont want me over 93 sat ,,but when i hit 59 or less ,i stump my feet and when people tell me then ,,,BREATH TRUE YOUR NOSE AND BLOW OUT TRUE YOUR MOUTH ,they don't know how hard this is ,,when you cant breath ,is the first thing you do ,even it is wrong ,you breath true your mouth .i can't walk very far ,cus i drop from 93 to 59 in one second ,,,,,is somebody have this problem , and what can i doo,,,,,I wish every one a good night and i will be back tomorow on here,,,Renate

  • Hallo,& a big welcome to you Renate,you have had wonderful advice from a lot of wonderful people,so I won't add to it!

    Just wanted to wish you well,& hope happier days ahead. xxx

  • Sorry to hear of all your problems. I too suffer from chronic coughing. I tried taking Oregano capsules (super strength ) or if you can take the liquid in a dropper under the tongue. This taste terrible but it works. Also one raw garlic pod minced up and placed on a tablespoon covered in honey with half a glass of fresh orange or lemon juice two or three times a day for a week. Another thing to do is try eating raw or steamed vegetables and lay of the carbs, sugar and wheat. Hope this helps and and get lots of rest and daily walks.

  • I take Spiriva & Advair they keep the disease from getting worst. Next is take what good lung and bronchial area you have and make the most of them, Breathing exercise, cardio exercise, treadmill and swimming. I am 67 I started smoking at 16 stop at 53 - COPD started around the age of 60. I also have central sleep apnea (I use oxygen compacter into my BiPap machine when I sleep), so beside other health issues I still feel like I got a lot living within me.

  • Welcome

    All of the comments are good sound advice. As many have said you know your own body and what is helping you. I have sudden drops in my O2 but I have a very different condition and my doctors do not understand what it does to you physically

    and mentally.

    You mentioned that the tablets were changed and it has got worse that need to be looked at. I had that and my fingers and lips went blue. got the dose tweaked and all more or less okay now.

    Be Well

  • Hello Renate. Glad that you found us on here and of course we will help you if we can.

    I am on Oxygen 24 hours a day and get very short of breath when I move around. so I have taught myself to relax, sit quietly, and try to get my breathing back under control. Sure it hurts for a while but I'm soon able to breathe normally again. It all comes with practice.

    As for how long you have to live ........ Come on Sweetheart, 'How long is a piece of string?'

    Make plans, live them, enjoy them then make more of them, be as optimistic as you possibly can, you won't feel any worse but you will certainly feel a darned sight better.

    Allan.

  • I have had it 15 years and at 3.5 litters, more when I am on the treadmill. Never up to 5. I stopped smoking 15 yrs ago and it's a slow process, each year a little worse. You just have to keep moving and maybe have your doc get you in a program to help move around a little more. This does help.There is no time limit on this, some have it for 25 yrs

  • Nothing wrong with your English Renate so don't worry about that, we are all friends here and we joke a little and complain a little as well. This is where you can unburden yourself and say it how it is. Look at us as an extension to your family, the part that knows and understands all the fears and worries that are confronting you.

    As for our illness and life span. How long is a piece of string? Just remain positive, plan on next week and the week after, make plans and when the day arrives make even more plans then enjoy them.......... just keep on making them and enjoying every moment with your family and friends.

    I am on oxygen 24 hours a day and have been for several years and am now in my Eighties after having hopefully beaten Cancer a few years ago.

    Remember Renate, we do understand so ask your questions, at the very least you will know that you are not alone when you log in here.

    Allan.

  • I read that you can make your breathing worse by turning oxygen up more than your doctor told you to. Best to check with your doctor. welcome

  • Hello and Welcome, Germany lady in Colorado! TAD gave you all you need to do. I hope you find help very soon.

  • Juliekkay I think you right , everytime i turne it up more , my breathing get worse ,i will stay with what my doctor told me , sitting 2L ,walking 4L ,, But i have a Question on anyone who might have the same problem , how i can control my sat when it drops to 59 ,it takes me 5 minutes to Lip breath to get it up to 91 again , sorry this is all so new to me , ii feel like a complete Dummy , I want to Thank all of you who responded to me on here and want to help me , you all wonderful and sweet People , you all make me cry ,I am a cry Baby comes to this sickness,i can honestly kick my rearend for ever smoking a Cigarette' i walked today 3 times to my Mailbox outside and back home , i been out of Breath , but not in the 50 ,it was 69 this time , maybe i need to walk , is it normal that my sat drops when i walk , i signed up for Rehab , can't wait ,maybe i can get to breathing a little better when i doo that ,i am so thankful to you all , helping me to understand this Emphysema ,,God bless all of you

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