← Return to MAC: Just how well do nebs work, anyway?

Discussion

MAC: Just how well do nebs work, anyway?

MAC & Bronchiectasis | Last Active: Feb 7 5:44pm | Replies (88)

Comment receiving replies
@camilleups

They might have changed their way of informing you of results. I can imagine it would be hard to digest all of this info after dozens of test. Yes they discuss every result from each day and the ones that had not retuned yet from a previous day. I have had 3 Drs and I think 2 NPs and at leasts 3 RNs that are assigned to you on different days. There is a FUP at the end of each day and that is the follow up appointment. I am also going to just a follow up appt on my last day. That is tomorrow. I was scheduled for 2 more days of just follow up appts with different Drs and asked to cancel them so I could fly out of here.
They all have been telling me the test results and advising me . I feel that it would be redundant and I have been testing 4 days with no time for lunch. Three days were 7 am to 5pm (including the FUP each day). Yesterday was 8 to 4 which was a nice break. Some of the tests had orders for no food or drink for 2 or 4 hours prior to the test. Luckily they have a small kitchen with sandwiches and drinks etc to grab on the go when you can finally catch up. They are more than kind and helpful. I made a friend with another BE and MAC patient on the first day. We had several tests scheduled at the same time the first day , then it all changed. We had very different tests after that as our cases were not the same. So they customize your stay to each individual. We are NOT treated like lab rats there.
I hope you find that they are more sympathetic to your needs when you return for your a future visit and you find them more understanding to you needs. You should let them know that the method they used with you was overwhelming.
They might have been told that it is too much at once and that might be why it is different now.
I do know some of my lab tests will come in well after I return home but I am pretty sure I have a handle on that already.
Hope you do well on this journey.

be

Jump to this post


Replies to "They might have changed their way of informing you of results. I can imagine it would..."

Thank you for your reply so quickly and during all you are doing/did at NJH.
It will be interesting to find out if they did change the procedure or if it depends upon the lead doctors preferred way of having all discussed, or the doctors philosophy. Who is your lead doctor, if you don't mind my asking? I met with my lead doctor for the 1st and last visit at NJH. It is a busy schedule. I did have a few lunch breaks and one lunch in the cafeteria. The food was good and they have/had a healthy selection or two.
True we are not, overall, treated like lab rats.
I drove from Oklahoma City to Denver and stayed the full time for all the tests. Actually my stay was all enjoyable with all the great things in the Cherry Creek Area where 'we' stayed. My terminoloy for my time in Denver and"NJH is 'a medical vacation.' 😊
How long before your final diagnosis, testing with C Scan, do you think you had symptoms of BE before they realized what it might be and ordered the test? As of now my one and only health problem is the BE and the constant need to clear my throat of sputum. I am fortunate in that sense, with just having the BE at this point in time....and may I say at 81 + 4 months. With all I have read, BE patients can live a full life with BE.....well I've already have done that. 🤗 With all my tests not showing any really concerning medical results, I apparently have a few more years at this thing called life and with THIS thing called BE 😁🙄😮
I will enjoy seeing your posts along the way on our journey with our BE diagnosis.
Thanks again for your reply. Barbra