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← Return to MAC: Just how well do nebs work, anyway?
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MAC: Just how well do nebs work, anyway?
MAC & Bronchiectasis | Last Active: Feb 7 5:44pm | Replies (88)Comment receiving replies
I was there in October and yes it was good to have all the tests to know where one is with their health and in particular the BE and MAC. However, your visit appears to have been handled very differently than mine in terms of the statement of: "A nurse, PA, or MD meets with you at the end of each day and reviews your results and discusses treatment plans, tests, options etc. for your next visits or your future. " Could you explain your statement further.. Were the discussions because the tests showed problems or were they good results and they discussed the results to tell you all was good? My visit there went well just that this appears to be so different an experience than mine. I didn't get any results until my last appointment with the lead doctor who quickly went through the test results and it was overwhelming to have all discussed in that matter. Doing it at the end, the last visit, in that one session left me with many questions once I was home. Some tests came in after I was home and I had to interpret them myself and I'm not a medical professional. I called the lead doctor and did get a call back to help me in my questions but our time was limited due to the Dr. schedule. I am trying to get the second follow up call I was told we would have. I think getting the test results at the end of each day would be much more helpful and allow one to better understand and digest the information. Again, the visit overall was/is well worth it to gain greater insight into our health. Glad you posted this for all to know for possible future visit(s) etc. and for an understanding to help ourselves.
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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.
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