The Better Breathers Club

If you’re fortunate to have attended a meeting of a COPD support group, I think you’ll agree – they are wonderful. They are good for the spirit and the soul.

The problem, I’ve found, is that there aren’t enough of them.

Pulmonary rehab and COPD support

When I began pulmonary rehab a few years ago, there was a support group associated with the rehab center I attended. It met once every other week and, initially, there were 20-30 people attending each meeting.

It was great! People spoke freely, ideas were exchanged, and it was as therapeutic as rehab but, obviously, in a different way.

But, as time went on, fewer and fewer folks showed up.

I’m not sure why and the social worker who ran this particular group, was not at liberty (because of confidentiality) to say why folks had chosen to stop coming.

Gradually there were 3 or 4 of us there and the meetings eventuality petered out altogether.

The Better Breathers Clubs

Jump forward 5 years and I became aware of the Better Breathers Clubs (BBC) of the American Lung Association.¹

A BBC meeting usually takes place once a month. There is a “search” mechanism on the web site that will inform you of the closest meeting place to your zip code.

I recently attended a BBC meeting at New York-Presbyterian Hospital in Manhattan. The meeting was run by the nurse/coordinator for the LVRS (Lung Volume Reduction Surgery) program and I’d had her when I’d gone there for my LVRS in 2014.

When I got to the conference room where the BBC was meeting, there were probably somewhere between 20 and 25 folks in attendance. Almost half of the attendees brought oxygen by tank or compressor. There was a gentleman there who carried 3 “D” sized tanks and a compressor on his walker! He also had a health aide with him.

And COPD was not the only point of discussion. In fact, at this particular meeting, the guest speaker was a gentleman who had contracted Sarcoidosis.

What is Sarcoidosis?

According to WebMD, “Sarcoidosis is an inflammatory disease that affects multiple organs in the body, but mostly the lungs and lymph glands. In people with sarcoidosis, abnormal masses or nodules (called granulomas) consisting of inflamed tissues form in certain organs of the body. These granulomas may alter the normal structure and possibly the function of the affected organ(s).²

The symptoms of sarcoidosis can vary greatly. Most patients initially complain of a persistent dry cough, fatigue, and shortness of breath.”² Sound familiar?

The gentleman sitting next to me told us of his wife’s misfortune in contracting the disease as a result of the dust and other debris that emanated from the wreckage of the World Trade Center on September 11, 2001.

Fighting every day to live with lung diseases

Carla Sterling, who is the Executive Director of the American Lung Association attended, as well as Katherine Pruitt, the Lung Association’s National Director of Health Education. I loved what Ms. Pruitt said about the BBC:

“What’s most impressive is the determination each of the participants have to wake up every day, get out of bed and do anything that might make their life better.

I really appreciate being able to come out and meet people who are actually living with the lung diseases that we're trying to fight. I’m always really interested in hearing stories and meeting club facilitators and members, and learning more about the good work that you all are doing together here. So, thank you so much for having me. And thank you for sharing your story today.”

Support came in the form of stories and advice

The meeting went on for about 90 minutes. I think all of us there wished it could go on for another 90.

There were so many stories – so much advice from other folks in similar situations.

Here’s some of the dialogue from the meeting.

Please note that names have been changed for confidentiality.

One person spoke of having slacked off from attending rehab. She told us, “You know I had to go in the afternoon. It's cold and dark in the winter and so gloomy over there. Honey, I just couldn't deal with it. When it’s warm and sunny, you know, maybe, I'll go back to it then.”

Another attendee told us that, “I had COPD, and I had Lung Volume Reduction Surgery about a year ago, in April last year, which has made me able to do things. Today I even managed to leave the house without my oxygen because I forgot to take it. Before the surgery, I was bedridden, and I couldn't walk from my bedroom to the kitchen.

So, it's made an enormous difference to me to have had that surgery and if anyone recommends it to you, don't be afraid. It's really a scary thought. But I really gotta say, I absolutely recommend it.”

Our nurse/facilitator followed up with an explanation of LVRS.

“It's primarily for patients with emphysema. The main problem is these big over inflated lungs. What happens as the tissue gets damaged, the elasticity of the lungs gets damaged with that. There's no recoil for the lungs to go on - to expand and contract. Over time, well, the reason that we can't expand and contract is that air gets trapped in the lungs and as the lungs get bigger, there's no room for the lungs to breathe.

Your diaphragm gets pushed down and now we've got these big overinflated lungs. We take out the areas that are most damaged. And that gives room for better functioning.

But it's a sort of a unique surgery. Only about 10% of the emphysema population actually qualifies for the surgery. If you can tolerate the surgery, it is something that has better outcomes then living without. It's very unique.”

Remarks about the importance of pulmonary rehab were echoed.

Support and resources for COPD and other lung conditions

Lastly, Carla Sterling, the Executive Director of the American Lung Association said, “Thank you. And, again, our blog, we have a helpline, any questions that you have just reach out! I know, when my father was diagnosed with cancer, he was sort of just googling things. And yeah, at that time, it didn't occur to me that I should go to an organization that has the resources to look at or call us.

Apparently, the American Lung Association’s Better Breathers Club program has been connecting people living with lung disease to support and each other in communities around the country for over 40 years. I only found out about them 2 months ago!

Remember. At least one of the purposes of support groups is that hopefully, you don't have to feel alone or isolated. It feels good to talk with others who understand and who can have a positive impact on your health.

And if you can’t get out of your residence, and you have a phone or computer, tune into “Catch Your Breath 60” on Facebook. It’s an online support group conducted by COPD.net’s own Barbara Moore.

I highly recommend it.