1. < MAC & Bronchiectasis

New to group... hello!

Posted by aerogirl @aerogirl, Aug 8, 2020

Hello - I happened to stumble upon this group today and glad to join a community with same/similar health challenges. It looks like many posts I've seen are dated ... just checking - is this discussion group currently active (August 2020)? Thanks!

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

nannette | @nannette | Aug 13, 2020
In reply to @woot "haydee, I’m so sorry. The best investment I ever made was going to NJH in Denver...." + (show)
@woot

haydee, I’m so sorry. The best investment I ever made was going to NJH in Denver. You will know you’re seeing the best experts in the US for bronch and Mac. Call them direct. You will not get a recording. You will speak to a real live person who will transfer you to the right real live person to set up your first appointment. I flew to Denver. Expensive. I stayed at a hotel. More money (but NJH has a list of hotels that give discounts for NJ H patients). My doctor there is Gwen Huitt, but anyone you get will be so knowledgeable. Your doctor back home can consult with them after NJH sets up your treatments. Do it. It really is your life.

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@woot Wow. You are so lucky to have Gwen Huitt as your doctor! She's like one of the best of the best at NJH. Nan

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cali2142 | @cali2142 | Aug 13, 2020
In reply to @windwalker "Hello cali2142. You can reach out to your local water company and ask them to test..." + (show)
@windwalker

Hello cali2142. You can reach out to your local water company and ask them to test your water for you. That is what I did. I explained my disease from mac and having bronchiectasis to the quality control person and she was happy to set that up for me. She was unaware that this organism can be in the water supply and unaware of it making people sick. She thanked me for educating her on this subject and was going to write about it within her company. If your water company will not do it for you, there is a lab that you can get to test it. I will get back to you with the lab info. Hopefully, the fact that you have had pink rings in your toilet will indicate the absence of mac in your water. I have a question: have you found a good pulmonologist & I.D. dr in your area? @haydee is looking for both. Thank you!

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I called the local company that tests our municipal water and they don't test for mycobacterium. I was told I need a clinical lab. My ID doctor is at UCI and my pulmonary doctor is affiliated with Hoag. I like both of them but have been to NJH and defer to them for treatment. Where in SoCal does @haydee live?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2020
In reply to @cali2142 "I called the local company that tests our municipal water and they don't test for mycobacterium...." + (show)
@cali2142

I called the local company that tests our municipal water and they don't test for mycobacterium. I was told I need a clinical lab. My ID doctor is at UCI and my pulmonary doctor is affiliated with Hoag. I like both of them but have been to NJH and defer to them for treatment. Where in SoCal does @haydee live?

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cali2142, She lives in Los Angeles. She said she may even make the drive to go to the Mayo in Phoenix. I hate for her to have to do that if there are good drs in her city.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2020
In reply to @nannette "@woot Wow. You are so lucky to have Gwen Huitt as your doctor! She's like one..." + (show)
@nannette

@woot Wow. You are so lucky to have Gwen Huitt as your doctor! She's like one of the best of the best at NJH. Nan

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Hi Nan! Did you see Dr Huitt at NJH?

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1 reply
cali2142 | @cali2142 | Aug 13, 2020
In reply to @windwalker "cali2142, She lives in Los Angeles. She said she may even make the drive to go..." + (show)
@windwalker

cali2142, She lives in Los Angeles. She said she may even make the drive to go to the Mayo in Phoenix. I hate for her to have to do that if there are good drs in her city.

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LA has top hospitals and doctors. She should check ID and Pulmonary departments at UCLA, Cedars-Sinai and USC. My ID is at UCI which is part of the UC system. Before I would drive to Phoenix, I would fly to Denver for a complete workup at NJH even with the pandemic.

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2 replies
nannette | @nannette | Aug 14, 2020
In reply to @windwalker "Hi Nan! Did you see Dr Huitt at NJH?" + (show)
@windwalker

Hi Nan! Did you see Dr Huitt at NJH?

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@windwalker, Terri, no, I have never even been to NJH but my own pulmonologist here in Beaufort who I started out with back in 2016 said he has talked to Dr. Huitt before (I'm assuming for advisement and consult) and then I've seen her name on published articles and in speaking engagements. She's top in her field. Nan

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 15, 2020
In reply to @cali2142 "LA has top hospitals and doctors. She should check ID and Pulmonary departments at UCLA, Cedars-Sinai..." + (show)
@cali2142

LA has top hospitals and doctors. She should check ID and Pulmonary departments at UCLA, Cedars-Sinai and USC. My ID is at UCI which is part of the UC system. Before I would drive to Phoenix, I would fly to Denver for a complete workup at NJH even with the pandemic.

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Thank you for your input. I will pass that along to her, or hopefully, she will see it here. Attn: @haydee

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jbud12 | @jbud12 | Nov 19, 2023
In reply to @cali2142 "LA has top hospitals and doctors. She should check ID and Pulmonary departments at UCLA, Cedars-Sinai..." + (show)
@cali2142

LA has top hospitals and doctors. She should check ID and Pulmonary departments at UCLA, Cedars-Sinai and USC. My ID is at UCI which is part of the UC system. Before I would drive to Phoenix, I would fly to Denver for a complete workup at NJH even with the pandemic.

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Hi, I am new to this group and I know this post is old, but does anyone know of a good pulmonologist in either Los Angeles or Orange County California that is knowledgeable in MAC? Thank you!

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