National Jewish Health NTM Patient Conf Recording available!

Posted by becleartoday @becleartoday, May 26, 2023

The NJH Patient Conference recording from April 29, 2023

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

kwi | @kwi | May 31, 2023

In reply to @helenrivera "Yes, that's bit then problem its the altitude. Its much to high... Has anyone been too..." + (show)

Then I guess you need to defer to the NJH staff, it they think it would be difficult for you. I saw people on oxygen when I was there.
The only location of NJH as far as I know is in Denver.
Cedar Sinai in LA has recommended doctors on the NTM info website.

helenrivera | @helenrivera | Jun 1, 2023

Has anyone gone too Oregon Health University. NJH recommends I try to be seen by their Infectious Disease doctor. Any info appriciated. Thank you

becleartoday | @becleartoday | Jun 1, 2023

Is it Dr Kevin Winthrop or someone in his department? I think we’ve discussed him before on this site. He’s an expert and an excellent choice.
Take care, Linda Esposito

annagh | @annagh | Jun 2, 2023

In reply to @helenrivera "Has anyone gone too Oregon Health University. NJH recommends I try to be seen by their..." + (show)

I saw Dr. Kevin Winthrop there on May 10, and liked him very much as well as the whole set up at OHSU. Everyone involved was compassionate and efficient. It's a 5-6 hour drive for me so they managed to get at CT scan and blood work done within hours, and I dropped off a sputum sample before leaving the next morning. I asked for a referral after seeing Dr. Winthrop on a video discussing when it's appropriate to watch and wait and I questioned my pulmonologist's recommendation that I start the big 3 immediately. Turns out Dr. Winthrop concurs with my pulmonologist, but he was able to show me the hows and whys. Waiting on the sputum cultures now, but I'll likely participate in one the trials he is doing.

gjaleski | @gjaleski | Jun 2, 2023

In reply to @annagh "I saw Dr. Kevin Winthrop there on May 10, and liked him very much as well..." + (show)

Hi, I am interested in what trials are available at NJH.

UC at San Diego has a bacteriophage department that may have phage viruses specifically targeting MAC. I am waiting for speciated results to my robotic bronchoscopy biopsies. I believe there are bacteriophage repositories at a few universities around the country.

Does anyone know of a working AI tool for matching MAC bacteria to bacteriophage strains? If there is not such a tool already in existence, there is a need, since phage therapy may be viable for a multitude of bacterial infections.

helenrivera | @helenrivera | Jun 2, 2023

In reply to @annagh "I saw Dr. Kevin Winthrop there on May 10, and liked him very much as well..." + (show)

Thank you. I am waiting to see if I should re-start the Big 3 + take Clotermizine. It would be a new med for me as it was discovered 8 months after taking Ariykace I am resistant. I am also a Lung Transplant Candidate and waiting to start a work up to be placed on the list. In the interim I am trying to decide if I obtain a 2nd opinion or just start the new medication along with the Big 3. I am feeling overwhelmed with trying to make the right decisions and scared.