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Don't know where to turn or what to do😔

Posted , 5 users are following.

brenda38238
brenda38238

so apparently I have stage 2 emphysema & I'm so frightened 

1 like, 20 replies

20 Replies

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  • hypercat
    hypercat brenda38238

    Posted

    Hi Brenda I understand your fears as it is very scary to be diagnosed with any chronic illness .   I was diagnosed with copd around 5 years ago (copd is chronic obstructive pulmunory disease) which in the UK is the cover term for emphysema and chronic bronchitis.   I am at stage 2.   Do you know your lung function?   Mine is 66%.  

    While this is irreversible there is a lot you can do to help yourself slow down the progress of the disease and even halt it for years.  If you smoke stop,  eat healthily,  exercise and take all your meds.

    This is NOT a death sentence!   So please don't panic people live well and healthily with this disease for many years and live a normal life.  I can still do anything I want albeit a bit more slowly,  partly because of age (I am 60).   Please don't google indiscriminately as you will scare yourself silly - stick to recognised sites.  

    I recommend you join The British Lung Foundation - it is UK based but is multi-national.  I am a member of their online site and it is brilliant.   There is a wealth of information there and here of course to help you with any questions and to support you.   

    Anything you need to know just ask and I and others will do our very best to help and support you.  x

    • brenda38238
      brenda38238 hypercat

      Posted

      Hi Hypercat & thanks for your reply. I'm 45 & my lung function as of last week was at a 66%. I'm scared to death of dying a slow agonizing death being unable to breathe. I feel so much despair, I don't think so much for me as for my kids. I knew the possible outcome of smoking.... But I didn't heed to any of that. Fit that matter I'm such a wreck that I'm still sneaking a smoke here & there. I feel so cheated outa life. I'm not trying to gain sympathy but I've had a life since a young age of fighting to just survive. Fighting for everything. Now I feel I gotta spend what's left of it fighting for air. Don't think I can do this...
    • hypercat
      hypercat brenda38238

      Posted

      Brenda please don't worry so much.  You are not being cheated out  at all of life at all.   At the age of 45 with a lung function of 66% the decline isn't that rapid.   

      I am still smoking and am trying to stop as well but I haven't lost much lung function in the past 5 years - only about 6%.  This works out at just over 1% per year.  If you stop smoking and do all the right things (which I admit I don't) you might not lose any lung function for years.  Even if you did lose 1% per year for the next 25 years you will still not be 'gasping for breath'.  You would need to be severe and under around 35% or less lung function for that to happen.  As long as you take your meds and and try your best to be healthy you probably wouldn't decline that much anyway and something else would kill you before then (old age?).   I know many people with lung function less than that who are still going strong and are happy and relatively healthy and enjoying life and some even still working.

      You will live to see your children grow up and your grandchildren grow up.  Don't let copd control you - you control it.   Live your life,  enjoy it and be happy.   x

  • DawnDedee
    DawnDedee brenda38238

    Posted

    Hi Brenda,

    I understand completely, but think you suffer more than me because I was born with severe asthma and by the age of 30, lost 70% of my lung capacity to permanent damage, so I became used to it, but you have it suddenly.  

    I am 56 now and still kicking, so there is hope for you.  Especially since we have wonderful miraculous medications to help us.  Over my years, I have steadily become more sedentary in my daily life activities, but over all, I kept taking long walks, practiced deep breathing exercises, visualization to keep calm during bad breathing attacks because if I panic and begin to cry it makes it so much worse, and I do not look blue like I should.  

    So fight Brenda.  Use the medications exactly as prescribed and do not skip just because one day you feel fine.  These meds take time to reach their fullest measure of effectiveness.  My personal favorites for my COPD is Spirava and Breo inhalers, Singulair pills and a good steroid nasal spray.  

    I learned from a great allergy specialist here in the States, that if you keep your upper respiratory passages healthy, then your lungs stay healthier.  Irrigation with salt water is great for the sinuses also.  Our lung condition can be easily set off by common viruses and it takes us longer to get over the viruses.  

    I learned from a great pulmonary specialist how to use my inhalers and nebulizer treatments more effectively.  Before inhaling medications, empty your lungs.  Blow out until you think you will die, then some and then when you take that desperate breath in, suck in the medication and hold it there for 12 seconds then exhale normally.  This helps the meds get deeper into the lungs and helps it stay in the lungs so it can do its job.

    Brenda, I have a lifetime of experiences in this department, and if there is any way I can help you, just ask and I will try.  Begin practicing relaxation breathing techniques, get to know your body.  Create that "happy" place you can visualize while in an attack of suffocation.  You can do this and this is not a death sentence.  The medications we have available are like a miracle.  Exercise and sing!  Singing is a great way to exercise the lungs!  Especially holding those long notes on the exhale.  

    I am with you in spirit and hope the best for you!

    Dawn

    • DawnDedee
      DawnDedee

      Posted

      And Brenda, STOP SMOKING.  I never smoked but ended up with lungs as if I had.  As difficult as your life has been for you, you have made it this far and this is a good time to stop self sabatoging yourself.  With our lungs there is a point of no return and your worst nightmare of what COPD will be like, will come true.  Love yourself, take care of yourself, honor your lungs.  I would give anything to have a new set of lungs and when I see people smoking, purposefully hurting their healthy lungs, I just want to smack the cigarette out of their hands!  By no means am I judging you, please know that, but you have a choice to not make yourself worse and I pray you will make the right choice.

      Hugs!

    • brenda38238
      brenda38238 DawnDedee

      Posted

      Omg! Dawn your words just brought tears to my eyes. I'm so trying to drop these nasty things. I've never been so well on will power. Although I know there are indeed people worse off then me. I think of all these little children especially going thru Hell on earth. I'm just really in a dark place right now. I actually was so bad this morning that I didn't even get up & go to work. I woke up thinking I just wanna go back to a sleep mode where I don't know these things. Bad, bad, place I know I'm at now. I've always been revered as the strong one & I can't seem to face this head on. I was at a point this morning where I was just gonna write each one of my children a letter to let them know how much I love them & how proud that they make me. I just wanna go to sleep & not wake up. That may sound horrible, but I'm tired.... Just so tired. You however are in my prayers with your uplifting & caring words . May God be with you
    • DawnDedee
      DawnDedee brenda38238

      Posted

      Brenda, it is alright to have reactions to sudden bad news.  That dark dark place you describe?   Honestly I have been there too, more than once.  I would line up my pills and begin to write a letter to my young daughter and as I wrote each paragraph of encouragement and guidance for her to be strong and succeed in life, I would swallow one of the many narcotics I had on hand because of different surgeries during that time.  Then swallow another with the next paragraph.  By the time I reached the end of my letter to her, I would realize that if I offed myself, then how could she ever respect me?  I would be asking her to do as I say, not as I do.  So I would fall asleepfrom the pills and see if I awakened in the morning.  Fortunately I always did awaken.

      I could not handle my daughter seeing me as a hypocrit, wanting her to be strong, but I took the easy way out.   And I am not a pill addict or any kind of addict, well, I am addicted to sugar which is bad, so for me to swallow those pills meant that I was in my darkest place.

      So, here is my theory about dark places, self pity, gut wrenching sobbing and all other manners of human suffering of which seem to occur deep into the night when no one is awake to call.  I think we are meant to have those dark places Brenda and during the darkest hours in the middle of the night we suffer and face it all alone and that is so strengthening for us!  The key is to not stay in the dark place or the pity place or the needy place for too long.  If there is no dark, then we would not appreciate the light! 

      We have a right to our reactions to shocking news.  We have a right to feel scared.  Always remember, "This too shall pass".  You will pull yourself up by your boot straps and take charge of this new condition with your lungs instead of allowing it to control you!  Even a strong warrior such as yourself becomes weary, so weary that you cannot put one foot in front of the other; cannot face one more pressure, cannot put one more thought in front of the desperate confusing thoughts.  Give yourself permission to feel the way you feel.  Just do not stay there too long.  

      So you stayed home and slept.  If that is the worst you do, you are already on your way up out of the dark.  Sleep again!  In fact, find someone who can take your children and sleep for two or three days in a row or more!  Do everything you do to cope except for smoke.  Each time you smoke, you are telling yourself that you are not worthy enough and the worst dark places are those brought on not by shocking news like COPD, but brought on by self loathing.  Self loathing brings the most dangerous self destructive dark places which are more difficult to shake off.  

      So, grieve the loss of your lung health, then begin your research on the internet and reach out like you have on here.  Then rejoice that you live in a day and age where science has so many wonderful effective medications for COPD and your life will be just fine.  The disease will redefine your existence to some extent, but have not fear.  NO FEAR.

      This is what this site is for.  Sharing experiences, knowledges, useful tips, shoulder to cry on and HOPE!  HOPE!  and like President Snow says in the Hunger Games movie, the only thing stronger than fear is hope.

      May God be with you too!  My lungs only function at 30% and encouraging someone else to take care of theirs makes me feel really good.

      Hugs

      Dawn

    • hypercat
      hypercat DawnDedee

      Posted

      Dawn what a great post.  My heart goes out to you for all you have suffered.  Your words are an inspiration and you are a strong brave person who has faced the terrible darkness and come through intact.   Fantastic!   You are wonderful.  

      Bev xx   

    • DawnDedee
      DawnDedee hypercat

      Posted

      Gosh Bev , thank you.  My day has begun with a positive lift because of you.

      Hugs!

      Dawn

    • hypercat
      hypercat DawnDedee

      Posted

      Good.  I meant every word as well Dawn - you are amazing  smile  

      Bev xx

    • ladyjack51
      ladyjack51 DawnDedee

      Posted

      You are gifted with words and I feel like what you told Brenda had to help her....and many others. I am drawn to you just from your posting and how you view things. God Bless you Dawn....there is a place for you in Heaven. 

      Ladyjack51

    • DawnDedee
      DawnDedee ladyjack51

      Posted

      Ladyjack51,

      Just the thought that my life long sufferings can be used to uplift others, gives me goosebumps and at the same time makes me feel beautifully humbled.

      God bless you too!

      Dawn

  • ron07867
    ron07867 brenda38238

    Posted

    Hi Brenda

    The first  most inportant thing "without exception" is to stop smoking. I am 62 and was diagnosed with severe COPD 18months ago(24%). I had smoked since the age of 8 and regular from the age of 11. I thought i could never stop untill i used the electronic cigs. I now exercise regularly and play at least one 18 hole round of golf a week. I have just recently had an annual spirometry test and my lung fuction results have increased to 38%. Therfore things are not always as bad as they seem and that there are things that you can do to help your situation. I hope you that can give up totally and live a long and happy life.

    Ron

    • hypercat
      hypercat ron07867

      Posted

      Hi Ron just see your post.  So your lung function increased by 14 points since you gave up smoking?  That is amazing.  Well done.

      I am lucky in that my lung function is still quite high at 66%.  I am struggling to give up the ciggies.  Do you think mine might increase as well if I gave up?   Is it possible I might even be able to take myself out of the copd range?   Thanks.  Bev x

    • ron07867
      ron07867 hypercat

      Posted

      Hi Bev

      I,m sure you can improve the 66%, if you stop smoking. Once you have COPD it is permenant I,m afraid. However if you dont stop it will get progressively worse. My younger brother (59) also has COPD and his is so bad, he his classifed as disabled and cannot walk up a set of stairs without having a rest. The the thing that worked with me after trying everything on the market,patches etc. Was to start using an electronic cig. best of luck with everything

      Ron

    • hypercat
      hypercat ron07867

      Posted

      Thank you for your reply Ron.  Even with smoking I am only losing around 1% lung function each year so I have worked out I will still have around 50% lung function when I am 80!   And something else will probably get me first!  

      Seriously though I must give up.  I do actually have 2 e-cigs and  2 vapourisers that friends have given me so there is no excuse.   I did once give up for 3 months with patches,  have tried zybon (brought me out in hives) and champix (worked but gave me very bad stomach ache),  acupuncure which didn't do anything and hypnotherapy - again this didn't help.  E-cigs do seem the way to go.   

      I am glad this worked for you and I am sorry your brother is so severe.  

      Bev x

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