1. < MAC & Bronchiectasis

A good online Psychologist for bronchiectasis patients?

Posted by lpfranco @lpfranco, Jul 26, 2023

I'm interested in connecting with a good online Psychologist for my wife and a dear friend that have bronchiectasis and have battled NTM infection. I'm just a carelover but even so, I can see the toll it takes on my wife and my friend mentally. From family and friends just not understanding that she's not going to get better, to the self isolation it can bring. I've always been a believer in risk versus reward. That's what I share with my honey bunny, but maybe coming from a person with no personal interest, it might be heard. Her infectious disease MD told her to pretend in times when risk is low for getting sick from others, (not holidays, flu season, not crowded places, etc.) to pretend she doesn't have bronchiectasis. She's trying, but it's a struggle. We all only have one life to live on this planet. We should all do our best to enjoy what makes us happy and not fear death. I could live in a bubble and live a longer life. But then I'd never get a third hole in one! I think each of us just has to decide our Risk versus Reward threshold. Off my soap box. Thanks for reading. Hope someone has a great recommendation.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

nana43 | @nana43 | Jul 27, 2023

Hi!
There are many support groups out there that can offer some assistance. Below is link to one site.( you may have to copy and paste in browser).
https://www.bronchiectasisandntminitiative.org/
Also I do a monthly Zoom meeting thru NTM info for patients with NTM and/or Bronchiectasis. They most probably have one in your area.
Hope that helps! Dee

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 27, 2023

@lpfranco Welcome to Mayo Connect - caregivers are a very important resource for those of us with chronic conditions. It may be very difficult to find a counselor knowledgeable about NTM or Bronchiectasis, because it is a rare disease. But I get great insights into living with my lungs from my pain management counselor. So perhaps you can find a counselor whose specialty is working with those with chronic diseases and conditions.

I don't personally know of support like you are requesting, but I really think someone else will step up. In the meantime, here are some resources you can look to:
The hospital your ID or Primary Doc is affiliated with will probably know of local resources. If they have a Lung Health, Heart Health or other specialty care center, you can contact them yourself and ask to speak to a social worker or care coordinator to find help.
The American Lung Association, lung.org has lists of resources.

Do you think your wife would be interested in our support group here, or would reading about others make her more anxious?
Sue

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1 reply
lpfranco | @lpfranco | Jul 27, 2023
In reply to @sueinmn "@lpfranco Welcome to Mayo Connect - caregivers are a very important resource for those of us..." + (show)
@sueinmn

@lpfranco Welcome to Mayo Connect - caregivers are a very important resource for those of us with chronic conditions. It may be very difficult to find a counselor knowledgeable about NTM or Bronchiectasis, because it is a rare disease. But I get great insights into living with my lungs from my pain management counselor. So perhaps you can find a counselor whose specialty is working with those with chronic diseases and conditions.

I don't personally know of support like you are requesting, but I really think someone else will step up. In the meantime, here are some resources you can look to:
The hospital your ID or Primary Doc is affiliated with will probably know of local resources. If they have a Lung Health, Heart Health or other specialty care center, you can contact them yourself and ask to speak to a social worker or care coordinator to find help.
The American Lung Association, lung.org has lists of resources.

Do you think your wife would be interested in our support group here, or would reading about others make her more anxious?
Sue

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Hello and thanks so much for your interest. She recently added this support group. I think it will help. This is by far the most interactive and informative group I've found so far and we've tried a few. Thanks for your suggestions as well. I'll keep you posted on what we find.

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