I’m on 2nd day at NJH

Posted by dispatchpat @dispatchpat, Apr 22 6:04pm

One of my practitioners today said “you sound like another woman I saw today”. I told her a lot of us in our online support groups trade best practices and we laughed.
So, if you want to share a meal this week it would be super interesting to trade experiences in real time. This is my first visit here, and I am really glad to be here. A lot of overwhelmed, but also a lot of confidence in these professionals in this setting!
I know I will not be able to write contemporaneously online in this group about my experience, I will need to digest and reflect with this group later in the process! And you bet I will! Thanks for being here! Best wishes for good luck To all of us! Pat

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

bsi15 | @bsi15 | Apr 27 8:13am

it's in Denver, so do they offer telehealth ?

coffcoff | @coffcoff | Apr 27 10:01am

In reply to @bsi15 "it's in Denver, so do they offer telehealth ?" + (show)

My understanding is they don't/can't do telehealth because doctors need to be licensed in the state where they practice. So unless you live in CO or the NJH doc you're connected with has a license in your state he/she can't prescribe meds or give advice over the phone or computer. That's why it's important too have a local doctor, who, by the way, can and probably should communicate with your team at NJH.

hbcupcake | @hbcupcake | Apr 27 9:09pm

I'm doing 10 days but I went to the ER last week after they upped my vfend. My sputum was almost all blood and the ID is worried about it so I'm seeing a surgeon tomorrow morning.

hbcupcake | @hbcupcake | 3 days ago

In reply to @jill6063 "Hi - I'm on my second day at NJH also! I'd love to get together -..." + (show)

Hi! Any updates or tips for NJH? I am going there June 9th and I'm interested in hearing about your experience. Thanks!

gails53 | @gails53 | 3 days ago

Hi DispatchPat,
I am headed to NJH today! I went to Mayo Clinic last month where they diagnosed me with CLL and treatment related Bronchiectasis and Immune Deficiency. I had been searching for a diagnosis for 7 months at home in Nashville where I went from being extremely active to barely able to walk from my bedroom to my kitchen! I am hoping to get my diagnosis confirmed and any recommendations they might have about continuing my cancer treatment (which I had to stop). I will be there until at least 5/24.

detsdum | @detsdum | 3 days ago

In reply to @gails53 "Hi DispatchPat, I am headed to NJH today! I went to Mayo Clinic last month where..." + (show)

You mention that your home is in Nashville. Vanderbilt is a center of excellence for Bronch/NTM treatment. Did you consult with them? If so, what was the result.

gails53 | @gails53 | 2 days ago

Yes, they tried for 6 months to figure out why I was having constant lung infections (all of the many tests were negative) and pneumonia which caused very aggressive bronchiectasis. The diagnosis's from my Oncologist, Pulmonogist and Infectious Disease doctors ranged from MAC to ILD, with a lot in between. They took me off of the cancer medication (Venclexta) and hoped that would help, but it didn't. They were supportive of me going to Mayo and NJH.