Young copd sufferer still confused

Posted , 8 users are following.

Hi I was diagnosed by my doctor to have copd 3 years ago I am now 40. my fev1 is 62%. I have no inhalers ECT and it's hardly affecting me.maybe if I go for a run I get slightly out of breath but I'm guessing anyone would without copd?? I get conflicting info on things as people say they only have 55% fev1 but are on inhalers steroids hospitals ECT... and this due to come in the next few years?i would love to hear from people who have had it from a young age yet 30 yrs on are still here.its hard to plan a future not knowing what's coming in the next 5 years or am I worrying to much.doctors don't say much about this disease apart from it's a slow deteriating disease. ps it was caused by smoking as my fev1 has not gone down since giving up 3 yrs ago.i was losing 2% fev1 every year whilst smoking thankyou

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9 Replies

  • Posted

    im not young by any stretch of the imagination, just wanted to say that no two people have the same symptoms or respond the same. my brother and i have almost identical FV numbers, yet my oxygen level drops to about 84 just walking from living room to bathroom and am on oxygen 24/7. if you didnt see my oxygen you wouldn't know i had it. i've never been congested, don't have much shortness of breath, feel fabulous & never been in hospital. my brothers oxygen level remains at 97+ without aid,, yet he has trouble breathing, has a heavy cough and feels bad all the time. both of us have FV1 of 46. Honestly of my primary care doctor hadnt gotten such a low oxygen level on routine check up & sent me to a specialist, id never have even suspected i had such a thing. Enjoy your days, stay off the cigs, keep your weight at a good level & eat and sleep well, you'll be just fine.

  • Posted

    keep exercising as much & as long as you can. Learn breathing exercises & start doing them now. Eliminate as much perfumed/scented stuff from your life as you can, from perfume/aftershave, to scented candles, febreze, and uber-perfumed laundry products. Leave any place where people smoke, whether cigarettes, pipes, cigars, or other things. Stay far away from people with colds & viruses, and, yes, eat a healthy diet. It's all about jealously guarding all the lung health you've got now & doing all you can to maintain it.

  • Posted

    thankyou for the replys. I'm guessing it's just a waiting game and to try and maintain what I have left.if I can keep my fev as close to what I have hopefully this will help.if it's not moved in 3 years that must be a good sign.im guessing a inhaler just helps shortness of breath? and not cures it or stops it in its tracks?I don't feel I need a inhaler but don't want to be not having one if it will stop it in its tracks?

    • Posted

      Rich, you have to ask a doc about inhalers. There are many different ones and they accomplish different things. Yes, there are fast acting inhalers that treat either dry coughs or shortness of breath (SOB). Others can take weeks to build up to therapeutic levels Those often treat swelling/ inflammation. There are probably other ones with different purposes now.

      You've done the single most important thing by quitting smoking, and the 2d most important thing also, by maintaining an exercise regimen. If you can, let go of this concept of waiting, which is waiting for something bad to happen. You have a condition you can live with, which beats the heck out of having something that will kill you in a year or 2. It will take time to change that mindset as you received a serious diagnosis

      Pay attention to your body. One of the pluses about breathing exercises is that if something changes, you'll notice that you can't do the exercises as well. At that point, get thee straight to a medico.

      If you haven't seen a pulmonologist, it's a good idea to see one now for a complete interpretation of those numbers & to decide if you do need an inhaler. We are all just patients here and cannot possibly decide if you need one.

      Hang in there, this will get easier.

  • Posted

    have you been to see a specialist ? if your still smoking your die much faster you must give up live much longer you have to do lung exercises that will help for the future trelegy puffer this help to keep me alive dont understand why your not on this should look in to this could be money they cost swimming is good get a different apinion with you the best mark

    • Posted

      thanks Mark.no I've not seen a specialised and have not smoke in 3 years since they diagnosed me.they told me I don't need any inhaler as I have no symptoms.they gave me a lung x-ray and that was completely clear and got me to do the spiromatry test and then said I have mild copd..the doctors are so vague as I guess they are not to concerned as I'm not far enough gone I suppose?

    • Posted

      Hi I am a bit confused here as first of all you say your FEV1 is 62% which is moderate, now you have been told it is mild? Which is it as it can't be both.

      If you are mild then it explains why you have hardly any symptoms and you would only need an inhaler if you are having problems. It doesn't arrest the disease but just helps deal with the symptoms.

      I was diagnosed mild in my mid 50's and am still mild 11 years later. I am still smoking (which I am working on) and don't lead a healthy lifestyle. I have been lucky so far but I know my luck won't last forever. As you have been told we are all different and I must have some good lung genes as well as bad.

      You have had some very good advice here so can't add anything to that. x

    • Posted

      thankyou. Yes my doctor says mild/ moderate I guess it's between the two.its 62% and has been for the past 3 years when I was diagnosed.i stopped smoking straight away.looking at past fev1 test before diagnosis i was losing 2% every year when smoking.for my job I have a health check every year which is how I failed the test at 62% but was ok the years before.me and doc went back 10 years of my health checks which is how we could see it was 2% loss and how we know it was due to smoking because it has now stopped at 62%

  • Posted

    Hello Rich,

    I can only assume you've come here as you are smart enough to realise that knowledge is empowering. That said, I offer the following.

    1. Get a Flu Shot every year. Even being affected with your level of COPD, the Flu can be deadly.
    2. Be extremely to not get Pneumonia, observe good habits to the highest level. Wash your hands (with soap) following every Lavatory visit. Clean every meat/vegetable that you will consume. Also, be more careful with your contact with others.
    3. Continue to exercise, for it is your best asset for continued good health. Also should you get laid up, you past exercising will work in your favor.
    4. Eat a balanced, healthy diet. Fruits and vegetables should take on more importance now that you are aware of your health condition.
    5. Last but certainly not least, schedule and visit a Pulmonary Specialist and begin a program of monitoring your condition. In addition, I fully recommend getting a complete physical examination from your family physician.

    I may have not listed some other important point, but I'm sure that if I did another will step up and help out. This list is not intended to be bossy or high tone, but a real caring effort to help you and others as we deal with our daily trials. Please be a regular and let us know how you are doing.

    All the Best

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