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Paula_MAC-2007
@Paula_MAC2007

Posts: 131
Joined: Mar 24, 2013

2017 NTM & Bronchiectasis Physician/Patient Conference

Posted by @Paula_MAC2007, Feb 15, 2017

From NTM Info & Research, Inc.

2017 NTM & Bronchiectasis Physician/Patient Conference

Join us at a day-long CME-accredited conference on nontuberculous mycobacterial (NTM) lung disease and bronchiectasis, on Friday, May 19, 2017 at Georgetown University in Washington, D.C.

Sessions will cover a range of important topics on these two diseases taught by key opinion leaders from around the world, and the day will also feature Patient and Industry Panel Discussions.

Registration is FREE and breakfast and lunch will be provided. Space is limited so register early to reserve your spot!

Click here to register for the conference!

http://campaign.r20.constantcontact.com/render?m=1101618704496&ca=a3bfadb1-a1c9-412a-9f55-a293ef414355

Click here to view the agenda and faculty.

https://www.ntminfo.org/images/media/News/conference_flyer.pdf

REPLY

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

@Paula_MAC2007

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

Jump to this post

Amen sister! Running out of gas half way through the day blows me away.

I’m exhausted every day! Sometimes, I wake up, take a shower, then feel as if I can’t do another thing until I lay down again!

@Paula_MAC2007

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

Jump to this post

Believe me, I feel you…….
 

@Paula_MAC2007

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

Jump to this post

I hear you girlfriend! I was always a high energy person. This totally goes
against my grain. I never complain and try to keep on going like normal. I
pulled it off for awhile, but now I listen to my body. It used to bother me that
I couldn't keep up in many aspects, even everyday life things: now, I accept it.
Hubby had not been so accepting. The more I sleep, the more he gets
it…….
 

@Paula_MAC2007

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

Jump to this post

I know……
 

@fransav

I’m exhausted every day! Sometimes, I wake up, take a shower, then feel as if I can’t do another thing until I lay down again!

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Hi Fran, Yes! That fatigue goes with the territory. I can hardly move most
days. I got a script for Adderall (speed) it is 20 mg. but I quarter it and take
only 5 mg. I do have A.D.D. but more importantly it gives me a little bit of
energy to enjoy life. I had to beg my dr to prescribe it to me. I told him that
life wasn't worth living if I cannot get off of the couch! My argument was for
quality of life, and he agreed.
 

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

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Wind walker……a million thanks for this excellent summary of the D.C. NTM workshop. Was Dr Falkingham the microbiologist there?
You mentioned NJH claimed to have “cured” some NTM cases…..how did they define “cure.”And how did they achieve the “cure”?
Thanks again.TerriD

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

Jump to this post

Terri, I did not see Dr. Falkingham's name in the credits. NJH said they
can cure MAC if it is 'non-cavatory' , said they have a 56%-85% cure rate. Can't
recall what meds they used, but it may be on their web-site. Pamela and Paula
were at the conference also, maybe one of them would know. If you cannot find
them to ask, I can tap them. I do know that NJH said that diagnosing the EXACT
SPECIE of MAC was critical and had to make sure it wasn't macrolide resistant.
Had mentioned orthoscopic surgery too for those with localized MAC. Usually in
the beginning stage of the disease before it has the chance to spread to other
lobes of the lungs. Wish I knew more, but, honestly, quite a bit went over my
head. – Terri M.
 

Liked by tdrell

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

Jump to this post

Terri, at some point a video of that conference will be available to all.
Will let you know if I hear of it being out.
 

Liked by tdrell

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

Jump to this post

Terri, you can check bronchandntm360social.org periodically and see
if they post the video for viewing. You can also register yourself on that site
to be included on the MAC/Bronch registry. Numbers of known people having this
disease helps them get funding for research.
 

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

Jump to this post

I would love to know when that video is available.
Has anyone had experience with Dr James Cook at Loyola University in Maywood, Illinois?
I have not had any luck getting in to see Dr Aksamit at Mayo, so have an August appointment with Dr Cook. He is listed on the Mayo site as an expert in NTM in Illinois, where I live.

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

Jump to this post

Hi Dale, check on the NTM wesite periodically. They said they would be
posting a video of that conference at some point. http://www.bronchandntm360social.org
 

Liked by tdrell

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

Jump to this post

Hi Terri and Terri M. – this is Pamela. I do not recall what meds they used, if it was mentioned. There was so much information at the conference; the video is going to be helpful to all of us! Pamela

Liked by tdrell

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

Jump to this post

Thanks ladies for heads up and link for video for NTM workshop you attended recently !!!tdrell

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