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Any Advice is greatly appreciated.

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christian0502
christian0502

I am 39 and have mild emphysema. I was told this was in the upper parts and that I should have no issues since I quit smoking 13 years ago and try to stay healthy as possible. However, I noticed I have been having to take a deep breath every 5 to 10 minutes. Sometimes I get it, other times I have to wait and try again. I took a LFT and my FEV1 was 118%. However, I also just found out due to a test that I am a carries of A-1 alpha-1 antitrypsin deficiency. I was told that it is MF which means I only carry one bad gene and should be good. What scares me is that I am already having to take a deep breath at 39 (turn 40 may 2nd) Since Ive stopped smoking does this progress faster than a smoker's emphysema? Am I looking at a shorter life expectancy. I know there isnt a definite answer to that but it seems I cant find anything on MF. Totally nervous of the future and the fear that I could have passed this on to my little girl. I just dont know if the emphysema is from smoking since it is on top or is it due to A-1. If my lung test was good, xray was good why would i have to take deep breaths? sorry for rambling, just new to this all and scared. P.S - in the states. 

0 likes, 10 replies

10 Replies

  • nykphenom221
    nykphenom221 christian0502

    Posted

    If you were told your lungs were good then that shouldnt be a problem bro i take deep breaths at 19 almost constantly but then again i failed my spirometry test and got stripped of my insurance so i couldnt follow up but one technique i use to better my breathing is blowing out my mouth as if i was blowing out a candle then inhaling through the nose. If your out of shape dude start exercising alot more that improves lung function. I smoked for about two years this is something i highly regret. From 14-17. Not heavy smoking but moderate i use to do alot of pot i was stupid but you should be fine man start running you'll see the difference after your lungs start hurting and your body gets into the motion remember exercise is the key to a healthy lifestyle be safe 1
    • christian0502
      christian0502 nykphenom221

      Posted

      Thanks cristianC908, That is what is so crazy about it. With such a good level, i find it hard to believe I have to keep trying to take a deep breath and sometimes not get. I am pretty much a healthy guy. I use to run about 5k 3 times a week stopped due to the winter but still take 12 fligths of steps twice to 3 times a day at work so it leaves me baffled to why i have this issue. I appreciate the feedback and good to hear you have stopped smoking! 

       

  • Vee2
    Vee2 christian0502

    Posted

    With a FEV1% of 118 you have no worries at all about your lungs at this time.

    If you are concerned about your needing to take deep breaths go chat again with your doctor, this could be something else entirely.

    If you are a carrier for Alpha 1 antitrypsin deficiency, you may want to get your offspring checked for this deficiency.  Check the alpha1 organisations, in the country you reside for more information of tests and advice, no doubt they will have a helpline.

    Check out the American Lung Association too for more details of local help groups in your area.

    • christian0502
      christian0502 Vee2

      Posted

      That is what is crazy Vee2, why do i have this issue when i have such a high score. i am checking with him tomorrow. I did recieve a call from the A1 help line. They gave me a little more background on my MF diagnosis. They say the F is newly discorved and basically produces enough protien but that it just floats in the body and doesnt do its job. They said I shouldnt have any issues with it even with minor emphysema but if that is the case it bugs me that i still have this issue. i appreciate your feedback though, i will also reach out to the ALA more more details as well. 
  • aitarg35939
    aitarg35939 christian0502

    Posted

    Hi Christian

    I'm in the States too. The most important thing you can get from this site is the difference between the attitudes of UK & US medicos toward lung function and respiratory problems. In the UK they clearly believe that even those with terrible lungs should receive attentive care, rescue kits at home and pulmonary ehab after flareups. If you find any of that Stateside, please let me know because I'll move there The AMA apparently insists that med schools teach that we are all lost causes

    Do not fall for that crap. Folks on this site encourage exercise and the use of breathing exercises because their system demonstrates that both of those improve quality of life. Listen to these folks

    I'm unsure what you mean about having to stop and take a deep breath. Do you mean you're running out of air/breathless? FYI research shows that people from North America alone in the world tend only to use their upper lungs, whereas everyone else breathes all the way to the bottom of their lungs habitually. When you fill your lungs completely, you will feel light pressure on your kidneys. The suggested technique above is excellent. So is using the harmonica with exercises. Someone will surely provide the link to videos of Breathing exercises.

    Regardless of whether your daughter inherited your suspect gene, a great gift you could give her would be to get her started on breathing exercises now. I'll go to my grave grateful for the internist who told me I needed to start breathing exercises in the shower every day if I wanted to maintain lung health with a pack a day of Camel unfiltereds. Thanks that a massive infection much later, I have chronic bronchitis COPD. If there is anything you can do to keep your daughter from smoking 1st or 2nd hand, do it. As I' m sure you know, lectures aren't the answer.

    Get pro-active and do all you can to maintain or improve your current lung function

    Aitarg.

    • christian0502
      christian0502 aitarg35939

      Posted

      Hey Aitarg!

      Basically it is all the time. I can be sitting, standing during exertion. The only time I truly dont recognize it, is when im sleeping. Its like I am breathing normal and then have to take a deep breath and i just cant get a complete satisfying one. I then try to wait a few moments and do it again and sometimes i get it. It has become very nerve racking. And yes, you are correct about the doctors. The lung doctor I saw seemed to be aggravated that he had to even see me that day. I will say however he ordered the Alpha 1 test. 

      My little girl goes tomorrow for the test. She has had a few health issues and im crossing my fingers that either A. if she has it hopefully they can get her on something to help her out early or B. she doesnt have it and they find atleast clues to help her current issues. Luckily no one in our family smokes anymore so its clear of second hand smoke. 

      I will have to take a look at the breathing exercises. I do feel that i use my chest more, i think that is why my ribs hurt so bad right now from trying to breath deep all the time. I appreciate your comments and feedback!

      Christian

    • aitarg35939
      aitarg35939 christian0502

      Posted

      With what you described in your reply I truly do not understand your test results. I don't know about the differences between emphysema and chronic bronchitis, but I will say that the only time I experienced what you're going through was back when I had the lung infection. I looked normal except perhaps for brighter or redder cheeks they check your blood gases?
    • abhi3112
      abhi3112 christian0502

      Posted

      Hey Christian, Hope you are doing well..I am also in similar situation like you are even though I am not yet diagnosed with COPD yet. as I am 31. I do feel pain in my ribs and back. Doc. has advised me to try advil which seems to help but not entierly. I was wondering you stopped smoking 13 yrs ago that means when you were 26 or something. How long did you smoke for and how much ?
    • Quandryite
      Quandryite aitarg35939

      Posted

      Very much appreciate your writing about the attitude here in the U.S.  I'll say that extends to most non-care, including cardiology, if you're not a patient who will submit to surgical interventions as a first step.  Scare tactics are ubquitous in the world, and on the internet, but here in the U.S., the docs seem to delight in - what it is - punishment-for-disease?  Reposting your important statement:   "In the UK they clearly believe that even those with terrible lungs should receive attentive care, rescue kits at home and pulmonary ehab after flareups. If you find any of that Stateside, please let me know because I'll move there The AMA apparently insists that med schools teach that we are all lost causes."  Thank you.
  • Keepin_Alive
    Keepin_Alive christian0502

    Posted

    Sorry to hear that you are having to take deep breaths so you can feel feel like your lungs are working properly, and that your A-1 test came back positive. I'm sure that your ending tobacco use will help. I am 72 and have experienced shortness of breath since age 59 when I first felt what it was like to have to gasp to get enough air. I recall the fear, believed I was on my last leg.

    As the years passed I did not change my life style and the breathing became worse. I retired in 2005 at age 62, by then I believed I had emphysema. 5 more years passed, and at age 68 was on oxygen, advair, and spirvia, and using a nebulizer daily. Pub days were over, chasing girls was over, no more cigarettes, golfing and vacations over -- living as accustomed to ended. For the A-1 test, be sure that no one knows what future brings - but a positive attitude and change in lifestyle surely helps.

    I won't tell you to not pick up a cigarette again, or to not drink to much at once, or not to live you life as you wish to, but I do wish you total recovery from any lung disease, and that you do not do what I did and not listen to anyone who has your best at heart. Good luck

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