COPD Group: Introduce yourself and connect with others

Hello. My name is Merry and I am one of the mentors for the new COPD group. I have COPD and lung cancer and emphysema.
Chronic obstructive pulmonary disease, or COPD, refers to a group of diseases that cause airflow blockage and breathing-related problems. It includes emphysema and chronic bronchitis. COPD makes breathing difficult but for a lot of us it doesn't

Although smoking causes about 85%-90% of all cases it certainly isn't the only thing that can cause COPD. Your environment (working with chemicals, dust, and fumes; alpha-1 deficiency-related emphysema ( a genetic form), breathing secondhand smoke ( my mom was a smoker); and a history of childhood respiratory infection.

Even though it's only the middle of February in my part of the world signs of spring will soon rear their beautiful heads along with difficulties breathing and other symptoms that will keep me in soon. Any travel that I want to do by plane will have to be cleared by my team and perhaps this year I might need extra oxygen. I know that I'm not alone in the progression of this disease. Each spring/summer it gets worse and I dread it. One thing that I have started to do is buy more indoor plants so that I can still garden, but I'll do it inside! lol

Sometimes I can't tell the difference between lost lung tissue and COPD which makes me feel bad or slows me down. Sometimes I don't think about my next step or forget to purse lip breathe and get so angry. This year I have a bit of a wheeze in my throat and a cough that has become a bit more regular.

I know that @2cents @ronap @gregoryz and @southerncharm have been struggling with different issues of COPD. Will you tell me how you are doing and any updates that you have?

My mother smoked constantly and I was around her a lot as I grew up . Also I had a lot of respiratory disease growing up. Fifteen years ago I was diagnosed with cough variant asthma. During the Covid pandemic I have been extraordinarily careful. Just recently I went into the hospital with chest pains and incidentally was diagnosed with Covid. My friends say if I got it, everyone will get it, that is how careful I was. My lung X-ray at the hospital says “hyper inflated lungs consistent with COPD”. I had no symptoms with Covid but now I have COPD. I’m waiting for my husband’s Covid test to come back before I contact my care team at Mayo. Any suggestions or advice will be much appreciated and I thank you for listening.

@mpeters- Good morning. Well, you didn't stand a chance of escaping some sort of lung disease! My mom smoked too, unfiltered chesterfields! Can you believe it? COPD Chronic obstructive pulmonary disease is when the lungs are inflamed from an irritant.

Since you have COVID, even if you have no obvious symptoms I would follow any suggestions that your pulmonologist gives you. I'm sure that you Mayo team will provide the best advice and care possible. Continue to isolate, or maybe quarantine until your husband's results come back. Have food and medications delivered if possible and rest, drink lots of liquids and keep track of any fever if you get one.

Even if your lungs show signs that are consistent with COPD after COVID is gone and you recover completely the COPD "look-alike" might be gone.

Best of luck with this and please let me know if your husband is in the clear and what your Mayo doctors suggest! ok?
Merry

Thank you for your kind and helpful words. My husband just tested negative. I will follow your advice, thank you.

I was diagnosed with COPD around 15 years ago, but hadn't really suffered serious side effects until recently. I am in remission from breast cancer that was diagnosed in June 2020 and completed chemo, surgery, and radiation in April 2021. I am still working through all the side effects of these treatments. It has been difficult to separate those side effects from COPD. It's likely that they can't be separated, but rather they have interacted to create another set of side effects. Anxiety has compounded it all. Last week the anxiety simply subsided, which suggests to me that it was a side effect of the chemo. A young friend who had cancer some years ago said that his longest lasting side effect (peripheral neuropathy) simply disappeared after 15 months. I am now on oxygen and am able to walk short distances again. I have to take the stairs in my townhouse several times a day, which is a real godsend. No matter how bad I feel, I have to sleep, eat, and do laundry on three different levels. I have finally found a good pulmonologist and will be undertaking a therapy course. I am 81 years old, so all of my alleles are struggling to hang in there.

Hi I have just been diagnosed with Ephasyma. I have Chronic Dyspnea that will not go away. I took a Plethsmography test and spirometry test and did 100 percent on it. Could someone help me by telling me how they handle their Dyspnea.

Have been diagnosed with COPD for several years, 75 years old, now in Pulmonary Rehab, 2X per week. Having difficulty with breathing while exercising on machines in Rehab with the covid mask on. How are others handling this?

What is/are the definitive tests for a diagnosis of COPD?

Good morning @mpeters- If you ever smoked you probably have COPD. Also, Spirometry is a simple test of how well your lungs work. Have you had this test? Has something changed in your breathing?

@dellat welcome to Mayo Clinic Connect. I did pulmonary rehab and loved it but it was before Covid. I feel for your frustration with masks and trying to learn a new breathing technique. You are learning pursed lip breathing, right? Have you tried different types of masks? Have you talked to the manager of the rehab for help with this?