RECENT COPD DIAGNOSIS & NEED ADVICE!

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I smoked for almost 20 years - started when I was about 40 and smoked maybe 1/2 to 1 pk per day.  In the last few years I noticed more and more shortness of breath.  MY doctors all knew I was a smoker and never pushed hard enough for me to quit.  I always thought the fatigue was heart related so I kept seeing a cardiologist and having EKG's, Stress Tests and Echocardiograms.  Only minor problems, like an irregular heart beat and some mitral valve problems came up but nothing indicating  major heart problem.  I also have been diagnosed with Sleep Apnea (about 9 years ago) and have used CPAP regularly for the past 4 years.  I was still getting very tired during the day and always telling my Sleep Doctor about this but he never suggested a breathing test or pulmonary function test to see if I had lung problems.  Finally about 4 months ago he got a chest x-ray and did a spirometer test on me and just matter of factly told me I have mild to moderate COPD (FEV1 was 55).  He didn't even put me on meds - just told me to quit the smokes which I finally did about 2 months after that diagnosis.  Then it was suggested on another site that I need to get a full Pulmonary Function test done so I saw a Lung Doctor and had that done - this time it showed my FEV1 to be 76 (this was about 3 months after the sleep doctor's diagnosis).  And this lung doctor didn't say anything about me having COPD or even try to put me on meds.  So on my next visit to my Sleep Doctor (just a few days later) I told him that I saw another doctor and had the full pulmonary function test done. So he called and got the results sent to his office and again said I definitely had COPD and he put me on Spiriva Respimat(to use daily) and a Ventolin inhaler (for use as needed).  I've been using the Spiriva for a few weeks now and have not noticed any difference in my shortness of breath or fatigue - in fact I've had much more fatigue and kind of feeling kind of dazed and some blurry vision since using the Spiriva. Do you have to stay with the inhaler for quite a while before you notice a difference in it helping you or should I continue it even though it don't seem to be helping?  Also I've noticed I've been clearing my throat almost constantly - about a month now this has gone on.  Is this a COPD symptom?  I don't cough much at all and it feels like I have phlem to bring up but I can't.  Just tired all the time.  So please, any advice would be really appreciated.  I am so confused at this point and scared as I know this is a progressive disease and I would like to think I have many years left.  I am now 62. Thanks

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  • Posted

    Jeanette I understand what your going though I think my mum at final stages of it mum doesn't listen to us it's so hard seeing her like this

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  • Posted

    Hi jeanette

    Tiredness during day time could easily be put down to you having sleep apnea and also an irregular heart condition, shortness of breath can also be related to the latter.  

    Not everyone does have one but a CT scan reveals more accurately the lung issue you may have, it is the one test for instance that can show emphysema which is where the alveoli sacs stretch.  Empysema is under the COPD banner as is chronic bronchitis, many patients with chronic bronchitis for instance have mucus production and are often prescribed for this mucadyne (a UK name) or carbocisteine, these drugs help keep the mucus thinner and more easily coughed up.  ensure you drink plenty of water as this also helps keep the mucus thinner and more easily coughed up.  

    Some people have both Emphysema and Chronic Bronchitis symptoms.  Many people with emphysema won't necessarily have a lot of mucus.

    FEV1 of 76% is still a very good result for someone diagnosed with COPD and its no where near severe so don't worry on that score.  Look after yourself well and you will have many years of living still to do.

    If you can access one try to get on a Pulmonary rehabilitation course as this will give you the tools and awareness to help manage your symptoms and provide you with information to help preserve lung health.  Good diet, exercise etc.

    Avoid contact with people who may be infected with a cold or the flu virus wherever you can.  If you get a cold your self try to act quickly to prevent it developing into a lung infection.  Any cold that develops into a hacking cough go see your doctor asap to have your lungs checked / listened to.

    People after PR and those who have learnt to manage their symptoms and are able to identify if they have a lung infection are give an emergency pack to keep at home which consists of ABs and prednisolone.  At this stage your doctor may not want to do this but would want to see you each time before prescribing this medication.

    It is important to treat lung infections quickly so if you suspect you have one see your doct quickly for the appropriate medication (this is the sort of thing you can learn on a PR course - how to identify if you have a lung infection)  Briefly some times are, a worsening of symptoms, increased breathlessness, tirednesss, coughing, mucus colour change (cream, green, dark) feeling unwell.

    Generally if the inhaler is working for you and you don't have a lung infection you won't have shortness of breath when resting unless FEV1% is very low (less than 24% for instance) but we all do get shortness of breath (mainly we do) on exertion and sometimes when eating or drinking.

    So regarding the inhaler if you feel it is not working you should go back to your doctor and do communicate the symptoms you are currently experiencing concerning, phlem to cough up, blurry vision, dazed (last 2 may be unrelated to medicine or COPD and may need checking out by your doctor)  

    So yes the phlem / mucus, throat clearing could well be you need to drink more water and get the mucadyne medicine.  Tiredness generally is also something initially that happens getting the right medicine can help this but in your case the sleep apnoea is probably part to blame also.

    Be sure to communicate all your symptoms to the doct when you see him or her, ask for referral to a pulmonary rehabilitation course ask about the mucadyne, ask to try an alternative medicine or to see the respiratory nurse to check your inhaler technique etc.

    Probably said enough for now, the PR course really is highly recommended.

    I am unclear if you are living in UK or US or elsewhere, if you are in the UK you will have to ask for a referral to a respiratory consultant who will be the one to action a CT scan for you.

    Best wishes V

     

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    • Posted

      Thank you for responding; like I said I am new to this disease, though I may have had it for some time my doctors never did the spirometer or pulmonary function testing until about 5 months ago.  I always complained about being short of breath and tired and I know much of that is attributed to my Sleep Apnea.  I also wonder if there might be any connection to a lung infection I had some 20 to 25 years ago - I was diagnosed with Histoplasmosis and I remember my doctor at that time telling me "You're either going to get well or you'll die from this."  I took antibiotics and I got well but the calcified remnants from this old granulomatous disease remained in my lungs (benign).  I live in the US in an area called the Ohio River Valley where this disease is more common.  I have already called about getting into a Pulmonary Therapy class and have to get a referral from my lung doctor. I'm still trying the Spiriva and only using the Albuterol if I absolutely need it but don't still know if they are helping. Please if you have any more advice or support send it my way.

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    • Posted

      Hi jeanette, the American Lung Association, has a list of Better Breathers Clubs which you may also be interested in investigating and for sure the American Lung Association will be able to advise you better about what you can do and access in the USA, local to where you are.

      You may find taking the albuterol twice a day or even just once at the other end of the day to when you take the spiriva.  I take my main lung meds am but prior to bed I usually take a dose of ventolin to keep the airways open through the night and to open up the airways before taking my steroid inhaler before bed.

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  • Posted

    Jeanette, you mentioned that you were from the Ohio River Valley, are you near Wheeling? If so, then I was raised up in this location too. So far, on a cat scan, my lung tissues are good, but the airways are swollen. They are not sure, but thinking possible severe asthma, or, some type of bronchilitis (inflamed bronchile tubes). I will have to look up the condition you mentioned due to the Ohio River Valley, especially if you are referring to Wheeling! I am very tired most days, but I always place it on lungs. But, Ive had both heart and lung problems, mostly lungs though. Good luck in your search, and please keep us informed! Brenda
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    • Posted

      You mentioned Wheeling - would that be West Virginia? I live in the Louisville area of Kentucky. Histoplasmosis is a lung infection that you can pick up from bird droppings, caves, fungus etc. I have had benign lung nodules and several chest x-rays over the years but I was never told that they showed any problems until my sleep Doctor did one this past February and said there were tiny holes in my lungs. That along with the spirometer reading lead to my COPD diagnosis. I keep thinking that since my doctors all knew I was a smoker for almost 20 years why didn't they suggest lung testing much sooner? I definitely would have quit smoking years earlier had I known it was leading to COPD. I wish you the best with your lung problems and 

      hope I can manage my condition to keep it from progressing too rapidly. 

      I also have an irregular heart beat and slow heart rate - mostly between 52-56 beats per minute. 

       

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    • Posted

      Jeannette, thank you for your response! Yes, I was born and raised in the state of West Virginia, and grew up mostly in Wheeling, Wva. We lived in Nicholasville for one year, but I was very young, only in the second grade. My mother became very homesick for her family, so we had to move back to Wva...lol! 

      I also have two very tiny nodules in the left upper side of my lungs. My pulmonologist thinks they are nodules, and has a yearly cat scan, making sure they are benign. I never would have thought that it could be possible for them to be holes. I will mention this to her. Thank you for letting me know about that. I hope your nodules are okay, and will always stay benign, and you will no future problems from them.

      I smoked for about twenty five years, but quit about twenty years ago. My cat scans showed no damage to my tissues, but it did show a lot of inflammation in my bronchial tubes (air passageways). They think it could be severe asthma, or, some type of broncolitis type of condition. I was hospitalized three years ago with heart failure, and then they found, from a quick PFT, that I had COPD, due to the FEV1 percentage. 

      The type of heart failure I had did not leave any heart damage, and it healed completely. So I was lucky regarding the heart...lol. I have the opposite effect with my heart though, my heart beats fast. There are some days when my heart beats faster than it should, sometimes like 105-120 bpm....but usually it is in the 80-90's bpm. When I walk, the bpm could go higher. The Cardiologist told me that I've always probably had the higher heart beat. 

      I hope you have the best of medical care, and that everything will be taken care of for yourself....the better we take care of ourselves, the better it is with this disease....exercise, good healthy diet, good medical care, etc. is very important. I learn so much from these groups too...stay with them, even if you only read, and you can learn so much from them! 

      ?Brenda 

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  • Posted

    Hi Jeanette. I have a similar Fev1 as you and it took almost a year to finally find the best inhaler for me. It is, as I have learned over the last year since diagnosis, definitely a trial and error scenario. I'm currently on Anoro Ellipta for almost two months now and it's working very I'm happy to say. If you would like to understand this disease I can tell you that in addition to this great site I also watched some of Dr. Noah Greenspan's webinar on You Tube...a wealth of information there. He also has a Facebook support group called Ultimate Pulmonary Wellness where he and other professionals in the field answer questions personally. It is from him that I learned there is a lot we can do to slow the progression of the disease and substantially improve the quality of life. Yes we can !! smile

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    • Posted

      It's been about 6 weeks now since starting to use the Spiriva Respimat inhaler on a daily basis and even if it is helping my airways and lungs I have not noticed any difference as far as my fatigue and shortness of breath go.  In fact I feel much more tired and even somewhat disoriented at times since using this inhaler.  Sometimes I just feel like I'm in a daze and don't know whether it's the Spiriva or just a decline in my condition or the extreme heat we've had this summer.  I've forced myself to take a walk almost everyday - usually about 1 mile of moderate walking - (even on the air quality alert days when it's in the 90's because that's what I read you need to do if you have COPD. For me being about 30 lbs. overweight and with my lower back problems that's a struggle on any day.  My chest medicine doctor (for my Sleep Apnea and COPD) approved Pulmonary Rehab which I actually start tomorrow - they weren't sure at first whether or not my insurance would cover it because they said one of my "numbers" wasn't in range.  I will ask many questions and next month when I see my pulmonary doctor and explain about the Spiriva see if he wants to try something different.  I was also prescribed Ventolin HFA 90 mcg to use up to 4x a day as needed.  So far I haven't used it because I haven't noticed any sudden onset of breathing difficulties - should I be using it every day regardless of this?  Would it make the side effects of the Spiriva worse?  I am still at a very confusing time being diagnosed only about 6 months ago and still somewhat in denial.  I don't want to have this disease, it scares me to death and all I thing about now is how horrible it will be as it progresses and I struggle for every breath.  I want to go back 20 years and not let myself ever pick up that first cigarette.  Funny thing is, I fely better when I smoked and now after having quit almost 4 months ago I feel like my life and my health have done a complete downward spiral.  Please, I welcome any advice or support anyone can give to help me through this very difficult time in my life.  I have 4 grown kids whom I haven't told about my condition for fear of them judging me and seeing me as weak ( they never even knew I smoked).  So I rely on these boards for the support I need.  Thanks!

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