MUSC Patient and Family Virtual Conference on September 9th

Posted by becleartoday @becleartoday, Sep 2, 2022

Before you get totally into holiday weekend mode, let me alert you to a patient conference. The conference called “2022 Update on NTM Infections Patient and Family Session” will be sponsored by the Medical University of South Carolina (MUSC) on Friday, September 9th. It will be both an in-person and virtual conference and they have extended the sign-up period to next Wednesday the 7th. Best of all, it will be led by the highly regarded Dr Patrick Flume and it is FREE!!!

Dr Flume is an expert in Cystic Fibrosis, Bronchiectasis and NTM Lung Disease. He is frequently cited for suggesting that bronchiectasis is not just a cycle of airway dysfunction, inflammation, infection and structural damage, but rather a vortex. His model acknowledges the interconnectedness of all the characteristics of BE and the complexity of the disease.

The MUSC NTM team will discuss different aspects of care ranging from diagnostic testing, treatment and monitoring, and review opportunities for advocacy and clinical research. The MUSC NTM team consists of pulmonary and infectious disease clinicians, nursing, respiratory therapy, pharmacy and psychology who work together to address the needs of those affected by NTM infections. (paraphased from the MUSC website)

To sign up, go to https://bit.ly/3Q5oBk9 and select the “online registration portal” on the left. You will have to register as a medical professional so select “Other” and “Patient Advocacy” as your specialty. (I confirmed this with the office overseeing registration)

This event is not expected to be recorded.

Thank you To bronchi-sister L from South Carolina for letting us know about this fantastic learning opportunity!

Enjoy the Labor Day weekend and reward yourself for all the hard work you put into managing your disease.

Best,

Linda Esposito, MPH

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

becleartoday | @becleartoday | Sep 17, 2022

My pleasure, Helen. Why would the development of Arikayce for refractory MAC be concerning to you?

helenrivera | @helenrivera | Sep 17, 2022

In reply to @becleartoday "My pleasure, Helen. Why would the development of Arikayce for refractory MAC be concerning to you?" + (show)

I am not sure, but may be due to how terrible it makes me feel.

cmi | @cmi | Sep 18, 2022

In reply to @turnbacktheclock "Thank you, Sue, for the links you sent. Would you by any chance, have contact info..." + (show)

Dr. Dorman’s email is dorman@musc.edu.
I wrote her and thanked her and the team at MUSC for that amazing presentation that offers hope, experience, and research. I asked her to keep me in mind for upcoming trials of “phage” research & development. She kindly reply very quickly to my email….”she will”.😎
Regina

sweethighland | @sweethighland | Sep 19, 2022

Thank you. Is there a recording to watch?

Terri Martin, Volunteer Mentor | @windwalker | Sep 20, 2022

In reply to @becleartoday "HERE ARE THE RECORDINGS!! Patient and Family Session, Friday, September 9 Defining NTM lung disease, Patrick..." + (show)

Sue, just want to say, YOU ARE AWESOME! Thank you for posting these links. I had wanted to attend that seminar as it is only 1 hour and 40 mins from me, but, I had already agreed to a Marriot Vacation with a neighbor. Hugs!

Sue, Volunteer Mentor | @sueinmn | Sep 20, 2022

In reply to @windwalker "Sue, just want to say, YOU ARE AWESOME! Thank you for posting these links. I had..." + (show)

You are welcome. It was a great fast-moving update.
I hope you enjoyed your little vacation.
Sue

Sue, Volunteer Mentor | @sueinmn | Sep 20, 2022

In reply to @sweethighland "Thank you. Is there a recording to watch?" + (show)

If you jump to this link, posted September 13th, you will find the recordings.
Sometimes, in active discussions, it can be hard to find the things people are talking about. You can scroll to the top of your current page and click "Previous" to see earlier posts.
Here is the post about the recordings:
https://connect.mayoclinic.org/discussion/musc-patient-and-family-virtual-conference-on-september-9th/?pg=2#comment-748960
Sue

sweethighland | @sweethighland | Sep 22, 2022

In reply to @sueinmn "If you jump to this link, posted September 13th, you will find the recordings. Sometimes, in..." + (show)

Thank you Sue. You once told me that you do not use Albuterol but you use another inhaler. May I know what that is? I'm going to ask my doctor about it. Also regarding Mucinex and NAC, which one do you take in the mornings and nights?

Sue, Volunteer Mentor | @sueinmn | Sep 22, 2022

In reply to @sweethighland "Thank you Sue. You once told me that you do not use Albuterol but you use..." + (show)

I use a generic form of Symbicort, a combination of budosenide & formotorol as my daily inhaler, morning & night. I still have a levalbuterol inhaler for wheezing episodes (very rare now that I am on the new one for 3 months.)
I take both Mucinex & NAC morning and night. I have been free of exacerbations under this regimen, so I don't deviate.
Sue

sweethighland | @sweethighland | Oct 11, 2022

In reply to @sueinmn "I use a generic form of Symbicort, a combination of budosenide & formotorol as my daily..." + (show)

Thank you Sue. I have been meaning to tell you that my doctor gave me levalbuterol. Glad that you educated me on this. But he said use it only when I need it since I don't have asthma. I started using both Mucinex and NAC as well. The B.CC bug is still there (showing as 1+). I asked him about reactive airway and he said I might have it. May I know what symptoms? For me, when I wake up in the morning, I wake up with a cough, then white foamy (slimy) mucus out. Then around 1pm, I always have yellow/green mucus (sometimes around 3 table spoons). Then, I'd be dry till night. I got the diagnose along with Bcc bug last year around this time. Before that I was symptoms free. I had minor hypmothesis in Dec 2017 and after CT it was concluded as viral infection. My pulmo then never educated me on airway clearance. I wish I knew since then. Since I did not know anything about airway clearance, I did not take care of myself, that was when this bug got in, which is hard to eradicate 🙁