Pt 2 of 2, @A MyCOPDTeam Member

I am a big fan of The COPD Athlete, @A MyCOPDTeam Member, out of Australia. While he started out and is still on this site, he’s mostly on his own site and fb nowadays.

https://copdathlete.com/

https://www.facebook.com/copdathlete

https://m.facebook.com/russell.winwood

He’s done amazing things through the use of regular exercise (to the point where he participates in marathons and triathlons while wearing supplemental oxygen, with only 26% lung function).

I tell you all this to strongly suggest that you work with your doc or docs, get all the necessary tests done (and get copies for your own records in terms of tracking what is and isn’t working over time, narrowing down your own triggers [heat, wind, cold, dampness, Winter, Spring, Summer, Fall, etc.]) and be diplomatically honest with your healthcare provider about what is and is not working in terms of any treatment plan for you.

As much as I’m a fan of Dr Google and doing my own research, I understand that I have limitations in terms of my training and knowledge gaps, so I need that trained medical professional on my team who I can trust to allow me to participate in my own care, and who will listen to me when I put my foot down (after trying everything, of course) about what I will or will not tolerate in my healthcare and daily wellness routine.

Sorry to babble on, but it’s important that your concerns be fully addressed, and that you work toward a tolerable solution that is workable for you, and which is reliable and factually-based over time. The good thing about science is that it’s always evolving, and as we learn new things, we make new decisions.

We all share the same umbrella label, but don’t have the exact same version of the disease, so I’m going to wish you every success on this new journey. Welcome to the site, and I hope you find the answers you are seeking from its members.

End of pt 2 of 2. Putting my soapbox away, LOL
Tuesday, 14-NOV-23

Mentioned Users

A MyCOPDT...

A MyCOPDT...

Yes, it is possible your body adapted to the damage and you just didn’t notice until you had a new trigger in the form of the mold exposure in your house from hurricane Ian. Welcome to the site, @A MyCOPDTeam Member, and I hope you find what you’re seeking from the laypeople members of this site.

*** As always, not a doc; this is not medical advice ***

You will find a lot of us patients on here will have tons of suggestions and advice, @A MyCOPDTeam Member - please remember that most of us do our own research, which is only as good as the source from which we get it, and the research and clinical trials done to back it up. We can be VERY opinionated (especially me, LOL).

*** YOU are responsible for your own choices ***

I’m going to give you some radical support and agree with your reluctance to use inhalers.

While I will use inhalers from time to time to get over an exacerbation or flare (because they *DO* help), I hate that I experience rashes, I run the risk of damaging my eyes through the side effects of cataracts, osteoporosis through the inhalers attacking my bones, etc., etc., etc., and that the steroids in my inhalers make my already grouchy temper rage out of control when using them. And that’s before we get to my outrage over the co-pays.

My belief (note I said *belief* and not *fact*) is that I need to keep the inhalers in the war chest and available if necessary, but that I don’t use them because the side effects aren’t worth building up a tolerance and not having a reliable go-to medicine if there is an emergency.

But… I have had the tough conversations with my pulmonologist. I don’t want to be labeled ‘non-compliant’, as that is a death knell to being taken care of properly if you choose to change doctors and you get a bad rep which follows you.

I have been with my pulmonologist since 1992, in good times and bad. He’s told me “You’re going to die if you don’t do exactly what I tell you to do!” (1996), and all these years later, (2017 or so) we actually laughed over that shouting match.

If you’re not going to a pulmonologist or respiratory therapist / specialist, if you’re not able to build a rapport with the doc you’re seeing so that you can debate the issues, keep on looking for the right pulmonologist that allows you to be a participant in your own care.

Like talking to your car mechanic, you may not have the right vocabulary to use to plead your case when participating in your own care, but trust your instincts, do your own research, and politely challenge your doc with facts from clinical trials, promising new research from the NIH, CDC, Mayo Clinic, Mt Sinai, etc., and keep fighting for your voice to be heard.

(Too wordy - pt 1 of 2)

14-NOV-23

Mentioned Users

A MyCOPDT...

I'm sorry you've had such disappointing results with the docs you've seen. Ordinarily, I'd suggest that you go to Mayo in Florida for a complete diagnostic workup, but you may have had such a negative experience you don't want to do that. You did say you'd be willing to go to Denver to NJH, and that would certainly be a great place to go for a complete diagnostic workup to see what's going on. I'd be sure to talk about the mold; that's important. I think you probably also need to see an Infectious Disease doc to check for mold; that would be part of the diagnostic workup. Why are you taking the azithromycin, who prescribed it and did they tell you why? It's done all the time, but there are specific reasons to do it and you need to know what they are. With an FEV1 of 35%, you should see some benefit from taking maintenance inhalers (be sure to ask what they are abd what they're supposed to do, how will you know if they're working and what to do if they don't work.); my FEV1 hovers in the mid 30s and I definitely benefit from them.

I'd also suggest that you need to learn a good deal aout COPD and basic lung disease: www.copdfoundation.org is a very good site; read everything in the learn more section for a good grounding in COPD. The more you know, the more you'll be able to partner with your docs for good results.

Good idea to see infectious disease doctor if things show up on a CT scan and blood work. I had Aspergillosis in my lungs. I have Bronciectasis , another lung disease.

I went to MAYO in Jacksonville and was seen by a fellow Dr who refuses to hear what I have to say regarding allergies and the problems I am having with inhalers. I was so very disappointed, he told me that he would suggest Breztri but he wouldn’t prescribe it because most insurance won’t cover it.
I came home, called my family Dr who gave me a sample. I tried it and I thought I was having an asthma attack, I could not breath!!! I used albuterol which made it a little easier to breath right after. I called MAYO Dr next day and told him but he just phoned in more medicine to use in nebulizer. I asked if maybe he could send me for a work up with MAYO infectious disease to see if perhaps I have an issue with mold in my lungs after being exposed (post house floodwaters, when my symptoms began) and he
Said “ no”. Then told me to go find an allergist and to confer with my family doc for further care. I’d like to add that I have good insurance so the fact that he was concerned about my insurance coverage made me lose confidence in him.
Maybe MAYO in Minnesota would have been a better option.