COPD Group: Introduce yourself and connect with others

@mpeters- Wonderful news. Now get well and let me know how you are feeling!

I”m feeling pretty well, thank you, but I don’t have a lot of energy. I make myself get up to walk in the house and am taking short daily walks in the mornings.

Hello, it's so nice to meet you. I'm Merry. Aren't you a hot ticket! , Haha, @writerbroad!!!! I'm 75 yr. and hear you loud and clear! Sometimes what we feel is not one thing but several. Right now I'm struggling with several different breathing threats. I have finally decided to stop wondering and deal with what I can control.
I'm glad that you will be having some therapy. I also did pulmonary rehab and it did make a difference! Other than oxygen and you taking any other inhalers?

I have been taking Advair 250 for several years. I didn't have major symptoms at the time I started it. Symptoms became severe during chemo. A couple of months ago, I stopped the Advair 250 and started Advair 100, trying to reduce the osteoporosis risk. My new pulmonologist added Incruse Ellipta. In the past, I used Spireva for a short time, but insurance would not cover it. I have just been informed by my insurance company that they will no longer pay for either of the two that I am currently using. My doctor is supposed to be contacting them to either get the drugs approved or find out what substitutes they will cover. I used albuterol once a few months ago, and it gave me a sharp pain in the chest, like an electric shock that knocked me backward, and I passed out. I was standing in the kitchen by my chopping block table and I grabbed onto it just before I passed out. I think I must have revived immediately. During my last test, they gave me an albuterol variant in order to improve my breathing for the last part of the test. I began gasping for air, and that effect lasted several hours. Guess I'm allergic to that stuff! A few years ago, a friend was talking about how much better our economy would be if we didn't spend so much on medical care. I told him that if we all became well at once, the economy would collapse with all those medical workers out of work. Right now, with so many people insured for the first time, the demand for medical workers is a bottomless pit.

@writerbroad- During your test when you had the reaction to Albuterol what did the technician do or say about it? DId you discuss cutting back the dosage to Advair with the doctor who prescribed it?

I didn't realize it could be an albuterol reaction until an hour later, when my "anxiety attack" was well past anything I'd ever experienced. The technician just gave me a low mark on the test. She was concerned as she escorted me to the front door of the hospital, but I was assuring her that I would be okay as soon as I got a chance to sit down and relax. The doctor diagnosed "severe COPD" and added the Incruse via a telephone call. The doctor who first prescribed the Advair isn't around any more. Parker, CO is a booming suburb of Denver, and young MDs run through here like a revolving door, and thus that first doctor is long gone. I did go back to the same practice much later, but the floors were dirty, some of the people in the waiting room were not masked, and the NP was dismissive when I asked about side effects. But I did have a good relationship with my primary, an experienced NP who shared my views on little medicine, good prevention. The insurance company had started covering Spiriva, and I mentioned to her my earlier good experience with it (which I got through the same practice but different doctor), and she gave me a prescription for it. My second Spiriva inhaler was defective. The little pin was missing the spot to release the med. It was about three days before I realized that was happening. I already had an appointment for a regular physical with my NP, so I just didn't take anything until that appointment. She was alarmed at my condition and asked me if I had any Advair left. I said, yes, and she said start taking it immediately, and I did. A year later, I was doing okay and asked if I could try reducing the Advair, and she agreed to give it a try. I felt the same as on the higher dose. At the time, I was newly in remission from Stage III estrogen-receptor breast cancer. It was during my chemo that the gasping episodes had begun. That desperate gasping abruptly ended a couple of weeks ago. It was just a few days ago that I read that anxiety was a listed side effect for the chemo. The reasoning, however, was that it was natural to feel anxiety during cancer treatment. That's not illogical, but it ignores the fact that anxiety, depression, and any number of "mental" states can be triggered by chemical reactions to medicines or foods or any sort of allergy. It never occurred to me that my anxiety could be a function of the chemo until it ended abruptly. It reminded me of a friend who told me that one morning he woke and his chemo-induced neuropathy was gone, 15 months after completing chemo. My chemo ended 13 months ago. Though I still experience neuropathy (and just learned that it could be permanent), for the first time since that first anxiety attack after beginning chemo, I can carry my rubbish to the dumpster and walk to my mailbox and back to my apartment without collapsing inside the door and gasping and heaving for 5 to 10 minutes. I did write a letter to my current pulmonologist to tell him about my belief that the albuterol triggered a reaction and described it to him. I know that my letter will go into my computer record, and we can discuss it at my next appointment. I have a new primary, because the NP I had has been reclassified as internet only in a restructuring of the practice, and the practice assigned me to someone else. I left the practice (even though I liked everyone who worked there) because the last five times they were to call me back on something, I never heard. The re-making of their practice seems to have everyone confused about who does what. The last time I was in their office, I was the only patient there, and was left waiting for 40 minutes for a referral document, and no one was tending the reception desk. When I rang the bell, I had to give my name, age, etc., and then she said, "Oh yeah. I needed your DOB." She had set the document aside and forgot why it was sitting there. But then I had to ring again 10 minutes later because my ride had arrived. She said she would email it to me. She didn't! But they did enter it in the computer and I received a call from the pulmonologist saying they had received the referral, but I didn't get an appointment as we discovered they don't take my insurance. That was the part she forgot: she was supposed to call a list of pulmonologists, find one who accepted my insurance, and then give me the referral document. So I went shopping for a pulmonologist and a new primary. It took me three months to get an appointment with the new primary, an internist who had been serving his residency at Baylor College of Medicine 40 years ago during the time that my former boss was head of Internal Medicine there. That distant connection was the only thing that stood out in a list of names. He is a self-admitted pill pusher and sees that as the role of internal medicine. However, he was unhurried, attentive and said he is willing to work with me as a sort of geriatric physiatrist, helping me to coordinate all these caregivers. After reading all this, you must feel like the little boy giving his book report: "In this book about penguins I learned more about penguins than I ever wanted to know."

HAHA, well no. I'm very interested. First of all, anxiety is very difficult to understand. I mean, really, who knows what really causes it? Is it the medication or my mind or both? I am a very anxious person. I have to take restless leg medications to even sit still. So I'm not really concerned with the underlying reason for myself. But whoever can hep turn it off become as hier in my will!

Boy did you hit gold! You found a coordinating medical live person! How lucky you are. All along I thought that a PCP was supposed to do this. But they just give referrals. You, my dear, have hit the jackpot!

Nevertheless, I am most interested in what your PCP finds out, what kind of doctors he recommends, and the results for you. Do you think that he knows anything about penguins?

Did talk to the pulmonary therapist. She is frustrated, too, and hopes the hospital will be able to stop requiring masks soon, as our Covid rate is going down in this area. Pursed lip breathing is hard to remember throughout the day, but I am working on it. Plain paper masks work best for me -- got some N95 type and they are harder to breathe in.

Also, I am unable to get an answer to this question from my pulmonologist, and haven't had a chance to ask my cardiologist yet. Why do I have difficulty breathing when walking (with my walker) around the house or down the street , but don't have any difficulty when exercising in Silver Sneakers or pulmonary rehab? I certainly am working hard in the exercise environment (sweating a lot, mouth breathing in gulps) but have never had to stop because of shortness of breath. Does anybody else have this experience?

Thanks for being a good resource. I appreciate your time and effort. dt

Good morning- I had this problem too, but without the walker. I found that I was anxious to do everything so perfectly that my anxiety was interfering. I found that if I started to feel this way I stopped walking. Then I started again. Even if it was one step at a time. Inhale every 2 or 3 seconds then exhale. It takes a while and is very awkward. I found out that when I was at rehab there was a competitive edge. We just tend to do better. We look around and don't pay as much attention to every little thing.

Can you ask one of the rehab trainers to breathe with you so that you can get a better grasp on breathing?

It might be a good idea to see your cardiologist for a check-up to make sure that everything is ticking as it should. Then, keep practicing. I think that it might be that with a walker you don't swing your arms so maybe a bit of coordination is off? Can you walk without your walker at all?

Do you have heart problems along with COPD?

Some years ago, I watched an interview with Shirley MacLaine. They asked her how she was able to breathe through long, energetic dance numbers. She said that she just breathed out and let her body take care of breathing in. About that time, my cousin began having panic anxiety attacks, the kind where it felt like a tiger was chasing him. He tried running them off. I told him about Shirley MacLaine's habit of just breathing out. He tried it and said that it was the magic bullet for him. The feeling of fleeing from terror abated very quickly. I tried it when I was very short winded and feeling anxious, and it seemed to help. Though it might be because I was concentrating on blowing out and relaxing my shoulders, which distracted me from from thinking about the anxiety. I have never experienced a panic attack, but I have been present when my cousin did, and he was truly terrified. Today I walked two blocks, the fartherest I've walked, since beginning chemo two years ago. Since the anxiety lifted a couple of weeks ago, I can walk upstairs to go to bed without collapsing at the top and gasping for breath, but I am winded enough to want to sit down and recover. Being old and sick is three steps backwards and one step forward. Boy do I love and appreciate that step forward!