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Newly diagnosed and Stunned.

Posted , 10 users are following.

larry57975
larry57975

I have read at least two hundred posts, comments, etc and no less than one hundred websites in the past month. I have a question about my diagnosis; ( a million really!)

I am 59, Male, relatively healthy, fev/fvc 67%, fev1 87%, Oxygen saturation of 98% BMI of 30% and shrinking. I did a treadmill test and walked 14 minutes at 198 HR at level 5 incline. I eat pretty well, work 55 hours weekly at a stresful construction management job. I do experience breathlessness at times though unless up hills, i can walk as long as I want up to a few hours if I chose (i dont often though) but do experience some "breathy" breathing. I have some mucus generation - especially in the morning though not to much as it clears out in about one hour +-. I do clear out my throat througout the day. My official diagnosis is Mild obstruction. My pulmonologist at a major hospital and I spoke for one hour last week and he said I would likely not experience any significant issues in my lifetime due to COPD. Of course i want to believe him but most everything I read from websites, blogs, personal accounts goes completely against what my pulmonologist told me. Can you please share your perspectives with me? I admit to being so overwhelmed with this new "life" that I have brought on to myself. I am an ordinary, single Dad who is raising my daughter full time. She is a wonderful 13 year old pre-professional Ballerina, warm hearted and thinks I am a mountain. She does not know I smoked ( I quit 2 years ago after 10 years of less than one pack per day). Could the doctor be right? I want so bad to believe but just cant. I also want to say that I read much from those who have lived with copd for a long time beginning where I am but are far into the disease. others have been newly diagnosed at stage 3-4 and are struggling to grasp all this. I do know that I am "fortunate" to be at mild but want others to know how much I honor all of us at this who are navigating the culture of copd.  Please share .  Thank you, LT

2 likes, 33 replies

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  • martin63346
    martin63346 larry57975

    Posted

    Hi Larry

    ​The first thing you need to do is relax - anxiety serves no useful purpose. Next, with a diagnosis of mild and given your present capacity to exercise etc., you are a long way from being incapacitated - even a diagnosis of very severe, is not only not a death sentence but many of us (me included) lead active lives. The key to maintaining and possibly improving your symptoms lies in the three wisdoms - Exercise, eating well and when prescribed, religiously taking your medication. I cannot emphasize enough - Exercise - let is become a religion every day - power walking and weight training. With these in place you will live a long and productive life.

    • larry57975
      larry57975 martin63346

      Posted

      Martin, I will do all I can to relax - I am confident it will not be easy as it is not the now I am worried about, it is the "long way from being incapacitated" that I struggle with. I recently lost an old freind to COPD and her last 5-7 years were tragic.  What I can do now (and started) is exercise, eat better. I am walking most days and joined a gym. I hear you loud and clear and will take your advice the best I can.

       

  • ladyjack51
    ladyjack51 larry57975

    Posted

    Hi larry57975,

    Depending on what you read...learning about COPD can be very scary. But a couple things are for sure...1. There is no cure...2. It doesn't usually improve unless you stopped smoking...it can improve your numbers aittle bit....3. You can maintain your health and stats right where you are if you take your medicine, take care of yourself, and don't smoke...4. You can live a very long time with COPD and may die from something else...5. Buy a pulse oximeter to have at home...the little deal that goes on your finger. It tells you the percentage of oxygen in your blood and your pulse rate. Usually at 88 or below you will feel tired or short of breath and this can help you measure your percentage anytime you like. Some Dr's say 90 or below but most say 88. This little device is important for your maintenance and pretty affordable on Amazon or even Walmart. I hope some of this helps....ask anything you want to. This is a good site with some really informative folks on it...with the exception of 1 or 2 ...lol...but 1 bad apple don't spoil the whole bunch right? Keep me posted.....you're gonna be around a long time for your baby girl Larry. You'll get informed and get positive. And stay in prayer.

    Ladyjack51

    • larry57975
      larry57975 ladyjack51

      Posted

      LJ, what is the value of the pulse oximeter to have at home other than knowing my numbers?

      I am interested to know more.  Thank you.  LT

    • ladyjack51
      ladyjack51 larry57975

      Posted

      Reread what I said... or maybe I can put it another way for you. I will try... the pulse oximeter measures the amount of oxygen in your blood meaning the amount of oxygen that's getting to your organs and that translates into how deep or how well your lungs are moving oxygen. A person without COPD usually runs around 95% or above. People with COPD can run usually somewhere below that without using oxygen. For instance I normally run at around 92 or 93%. If my percentage gets lower than that then I know that I should put on my oxygen and watch myself because I maybe fixing to have an infection or some kind of breathing problem. Or I could just be out of breath from some exertion that I just did for me the only time I ever need oxygen as if I exert a little too much. But at first when I was newly diagnosed I was on oxygen 24 7. But then I quit smoking that very same day that I was diagnosed which has been a little over a year ago and my lung function Number actually improved a little bit which is the numbers you have been given now from your test. And so I don't use oxygen anymore except when I exert. The other number on the pulse oximeter shows your heart rate which is how fast your heart is beating so if your heart rate is accelerated then it's working harder to help you breathe specially if you are for instance at something like 88% and short of breath. Does this make a little more sense to you? So most all of us have this little device in our homes and we can just check really quick if we feel a little bit short of breath and wonder what's going on we can quickly check and see if air is moving below what it should be, percentage wise, through our body. I hope I explained that better. Let me know bc i will try again if needed.
    • ladyjack51
      ladyjack51 larry57975

      Posted

      Like when you go the emergency room and the nurse puts that little deal on your finger while she checks your vital signs?.....she's checking the same thing...how well you are moving air around in your body and blood and organs.
    • larry57975
      larry57975 ladyjack51

      Posted

      Thank you LJ.  I have read lots but have not yet put things together. I am aware of the instrument you refer to. Can you give me your thoughts on why my pulmonologist stated that I had nothing to worry about regarding my numbers/copd - even refering to me as a hypochondriac who worries to much!? He did prescribe three inhalers, told me to take them for a couple months and return for another spirometry reading.
    • hypercat
      hypercat larry57975

      Posted

      Hi Larry I understand what a shock it is to be diagnosed with a lung disease - wel all do.  But to put it into perspective I was diagnosed as mild around 5 years ago (aged 56) and am still mild.   The doctor  told me not to worry so much as something else would get me first ie old age!   

      Obviously you have to look after your lungs,  live as healthy a life as possible and take your meds.   With your FEV1 you will still live a long and healthy life.   x

    • ladyjack51
      ladyjack51 larry57975

      Posted

      IM sure he told you not to worry for the same reasons me, hypercat, and Josephine have....when you catch it at the mild stage...that's really good bc your symptoms will be minimal probably...as long as you take the meds. You may have to be on those meds the rest of your life...he may change them around a bit to get the best affect...and that's why he wants you to come back in a couple months and retest. And it will be interesting to see since you will have learned so much by then. If you remember...they had you blow before you took anything...then they gave you some inhaler and had you blow again right? Your test tells you right there to what percentage that inhaler helped you. You just don't know how to read that paper yet and it is alot of freakin numbers but you'll learn what's important. Like I said....bc you caught it early you will probably maintain right where you are for a long time if you do what you're supposed to and you'll be there for your daughter. It's gonna be ok Larry....you are blessed to be mild. I have 50 % lung function and I only need oxygen with exertion ...I am moderate to severe...they told me I was severe at first but like I said, I think I improved a bit by stopping smoking thank God.
    • larry57975
      larry57975 hypercat

      Posted

      HC, do you have exacerbations? what are your fev/fvc and fev1?

      LT

  • josephine_30311
    josephine_30311 larry57975

    Posted

    I'm same as hypercat .. diagnosed as mild 4 years ago and no change.

    Yes, I have the odd ' flare-up' and its not nice, but I get over it.

    It helps to get some weapons in your armoury though:

    EXERCISE .. most importantly. You dont have to run marathons 5 days a week or enter for 'Ironman', just a nice brisk 30 mins walk will suffice .. but try and do it every day if you can.

    Eat well .. take your prescription meds, and take a good multi vitamin every day (and I've heard say that a high dosage cod liver oil tablet a day (1000mg) also helps) .. and make sure you get your flu jab every year.

    I always keep a bottle of 'First Defence' at hand .. and at first signs of a cold .. USE IT. It does work. I also keep a bottle of hand sanitiser in me pocket .. in short do all you can to avoid cold and flu virus's.

    Learn the breathing exercises and DO them every day (there's lots of Youtube videos explaining how) .. and if you think anxiety is becoming a problem, look to trying some Yoga or Buteyko breathing.

    Use this forum .. I've learnt more about the condition, and received better advice and tips here than from all the nurses and doctors. You're not alone Larry.

    Most of all stay positive. DON'T allow this to take over your life. If you follow the rules, chances are, you are NOT going to pop your clogs any time even REMOTELY soon, and 'old age' will get you long before COPD does.

    Good luck!

    Jo

     

    • larry57975
      larry57975 josephine_30311

      Posted

      Jo, are the "flareups" you are refering to, "exacerbations"? ON a personal note, do you share your copd with friends and familiy?  I feel that I cannot becuase frankly, smoking has such a stigma attached. While taking my spirometry test at the hospital, the tech was talking openly and becuase he assumed I did not have copd, he was speaking openly with me. At one point, he stated that he has no sympathy for those with copd as they brought it on themselves. Frankly, I also though that I did not have it while taking the test! I was rather upset with his attitude even though I did not think I had it then.

      LT

      Thank you

    • josephine_30311
      josephine_30311 larry57975

      Posted

      Hi Larry .. I hesitate to call them 'exacerbations', because (so far)  there's been no lung infection present and I've never needed to go to hospital. They only last a few days .. and I cope with them. It's just a feeling of 'unwellness', and a general 'chestiness' really .. I get a bit of a cough, I'm a little more short of breath than usual, and I tire very easily. I get a bit down, but I just keep telling myself it'll pass. And it does.

      And as for that stupid lab technician .. he's definitely in the wrong profession if he feels no sympathy for those who 'bring illness upon themselves'. What an absolute pratt!!

      Jo

       

    • josephine_30311
      josephine_30311 larry57975

      Posted

      Larry .. smoking isn't the only cause of copd .. Asthma comes under the heading of copd, and so does chronic brochitis and emphysema .. all of which aren't necessarily caused by smoking.

      So if you're not comfortable about telling your daughter you smoked, then don't mention it to her. Although as your daughter, i'm sure she'd appreciate the truth. And the truth is that mild copd .. if managed properly ..  is NOT a death sentence!

  • emmgee
    emmgee larry57975

    Posted

    Hi Larry,

    Hypercat is dead right, if you'll pardon the expression. An irrefutiible fact of life is that you will die sooner or later, and it'll be the former if you get worried or streesed about it. Otherwise, provided that you have no other life threatening problems you haven't mentioned and already having given up smoking, there's no reason why you should not have another 10 or 15 years ahead of you. I was diagnosed in 2007 but didn't quit smoking until I woke up in hospital (and nearly didn't) in 2008. And I'm still here to tell the story.

    So "Always look on the bright side" - it could have been a great deal worse - dementure, ME, being run over by a bus or the big C - so get on with enjoying your life and forget those pulse oximeters for at least the next 5 years because their inaccuracies and visiscitudes will drive you to drink. Er... pass the bottle over please.

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