Have I really got COPD?
Posted , 4 users are following.
I find it hard to accept that I supposedly have COPD as I have never smoked in my life. I had my first asthma attack when I was 7, I'm 74 now, I have only had a few attacks in my lifetime. My asthma has been under control with a preventer puffer for all of my adult life. I noticed a cough in 2015 and I am still coughing in Dec. 2017. I have seen a lung specialist and an ear nose and throat specialist. The only thing that showed up was sleep apnea. My GP gave me a spirometry test as my breathing has become more difficult and I now wheeze sometimes especially when I try to sleep so I have to use Ventolin.
Anyway I am now on 2 puffers and my breathing has not improved so in Jan. 2018 I am going to have another spirometry.
What I'm trying to say is I cannot see how I could have got COPD. Can anyone let me know what they think.
2 likes, 23 replies
Grunthos elaine59512
Posted
Hi elaine59512,
I'm in a similar position. I have been asthmatic all my life and was diagnosed with COPD ten years ago. I did smoke for about six months in 1972 but that's all. I believe most of my problems are due to passive smoking - pubs, buses, restaurants etc.
As for the medication, I took ephedrine hydrochloride tablets until I was 30, then switched to Ventolin for a few years, then onto Ventolin along with a brown inhaler (beclamethasone?), then onto a combination of Seretide and Tiotropium ten years ago and finally an inhaler called Trimbow for the last six weeks.
The important thing is to work with your COPD nurse or GP to find an inhaler that suits you as your COPD gradually gets worse.
elaine59512 Grunthos
Posted
Thankyou for your reply. Do you also have a cough, I'm beginning to believe my undiagnosed chronic cough is part and parcel of COPD. One other thing I didn't mention is I sometimes have sharp pain below the breasts, sometimes left, sometimes right. It lasts a minute or two. I will mention that to my Dr. when I see him as I don't know if that' related to COPD or being slightly overweight.
aitarg35939 elaine59512
Posted
According to my pulmonologist, 25% of folks with COPD in the States never smoked at all. That's cold comfort, but you're not alone.
elaine59512 aitarg35939
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Thankyou for your reply. I guess I have to except the disappointing fact I have COPD. From what I have been reading it's a blanket name covering different lung problems.
aitarg35939 elaine59512
Posted
Yes, it is a blanket term. I've got the chronic bronchitis form, courtesy of a massive lung infection in '85 ,,, and continuing to smoke after that infection. You're also right about many of us having chronic coughs as part of this. Sometimes those are improved by inhalers, some of which gave to build up in your system for 1-3 months. Tell your docs that you're still coughing.
elaine59512 aitarg35939
Posted
I have had a problem with my voice for so long I now think of it as my normal voice, maybe it is caused by meds for blood pressure and cholesterol which I have been on for a very long time. I saw another Dr. not long ago (for bad back pain) as my Dr is not open on weekends . He took me off 2 blood pressure meds and 1 pain med (for my back) and put me on 1 blood pressure med. in the hope my cough would stop, it didn't. When I returned to my Dr. he put me back on the tablet for back pain.
Anyway my voice has always been husky and people have commented asking if I have a cold or whatever. Sometimes it has faded away all together.
Incidentally this 2nd Dr. said I don't have COPD because I don't and have never smoked.
aitarg35939 elaine59512
Posted
I'm sorry but the doc who says you can't have COPD because you never smoked is wrong. The spirometry is the guide. Sometimes with meds we may come back up to a healthy level for our age group on the tests but we still continue on the meds.
I replied to you in a different thread about your deep cough & its effect on your voice but didn't know there that you're on cholesterol meds. Lipitor can have a huge impact on the vocal cords, as can some puffers. Not everyone suffers those side effects.
Vee2 elaine59512
Posted
A respiratory specialist will be able to determine precisely what lung issue you have through several tests, xray and ct scans.
It is known that asthma long term can reach a stage where it worsens to a degree COPD is diagnosed. On the other hand some people with asthma have been mis diagnosed and some with COPD have been misdiagnosed. It happens I believe at GP level. Its less likely to be mis diagnosed with tests scans mentioned previously and referral to a specialist respiratory consultant.
You may want to read the pinned post titled 'Tips+ know the difference' if you haven't already done so.
https://patient.info/forums/discuss/tips-know-the-difference-478568
Years back a chap in his 70s had asthma all his life and after seeing a specialist he was actually diagnosed with Alpha1 antitrysin deficiency which is something that usually shows its self at a much younger stage. You may of course not be mis diagnosed but only way to know for sure is the respiratory doc referral and CT scan.
Vee2
Posted
elaine59512 Vee2
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Thankyou for your reply, I read Tips + know the difference. my 2 puffers Flutiform and Spiolto Respimat do not work or if they are working they do very little . I'm having a spirometry test tomorrow, have had 3 attempts at this test over last 2 weeks. The part you breath into attached to the computer have not been working on my previous visits. Looking forward to some decent answers.
mattlipsey elaine59512
Posted
I am a respiratory therapist. If you are still having symptoms the pulmonary functions test will probably not be as exact as you and your physician want them to be. If he/she is looking to see where you are heading then it shouldn't be a problem. In order to take the exam your inhaled meds need to be held. for your bronchodilators ventolin or duonebs need to be held 4 hours prior to the exam. your inhaled steroids and long term bronchodilators even longer. the exception is if the doctor wants you to take the test with them. Each pulmonologist or pulmonologist group have different orders when it comes to taking respiratory medications and having a pulmonary functions exam. Good luck those exams usually make a person with healthy lungs work out a bit.
elaine59512 mattlipsey
Posted
Thankyou for your reply. I had a Spirometry test today. I get the result on Wed. when I see the Dr. The nurse who did the test said I haven't got asthma (which I have had since I was 7). She said the 4 puffs of Ventolin given during the test did absolutely nothing for me. That's as much as I know so far. I didn't use my preventive puffers that morning before the test. I have noticed when I use Ventolin I am still breathless upon any kind of exertion.
mattlipsey elaine59512
Posted
If they gave you a copy of the report look at the fef 25-75% pre and post that number is a sensitive number and the first to drop pre then improve on post. Your flow volume loop can look almost normal. It's those numbers that I always look at
elaine59512 mattlipsey
Posted
I'm in Australia.. I have the report but there is no fef on it. Only FVC, FEV1, FEV1/FVC, PEF, ELA, FEF2575, FET, FIVC, FEV1/VC with lots of columns and numbers which mean nothing to me. I see my Dr. tomorrow for his explanation of what is going on.
mattlipsey elaine59512
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Vee2 elaine59512
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You must have missed the bit on the tips and know the different page. If you go to link below, its explains all about the abbreviations and with the print out you can use the calculator.
https://patient.info/doctor/spirometry-calculator
Vee2 mattlipsey
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mattlipsey Vee2
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Vee2 mattlipsey
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elaine59512 Vee2
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I couldn't fill out the spirometry calculator as each Parameter has 10 columns of numbers, I didn't know which ones to put down.
?Seems I may not actually have COPD as I have been off my preventive inhalers 2 days. The Dr.. said stop them for a week to see if my cough stops.. He said results of spirometry not too bad, said I have asthma/COPD. Today ((2nd day) I went for a walk, used Ventolin before I went, weather was cool for a change and I was less breathless than usual. Had a sleep this afternoon and used Ventolin to stop wheezing so I could rest. Tomorrow I will try to do without Ventolin at all.
elaine59512 Vee2
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mattlipsey elaine59512
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Vee2 elaine59512
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No I don't cough much at all either, but I know my diagnosis without doubt.