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Should I keep my NJH appointment?
MAC & Bronchiectasis | Last Active: Feb 20 7:44am | Replies (41)Comment receiving replies
@blm1007blm1007 my experience and opinion of NJH hasn’t changed, unfortunately. If anything, it has worsened. That said, their expertise is undeniable and sometimes we have to take the bad with the good. I am going to a local NTM specialist later this month to evaluate moving my care. Given my advanced disease, I wouldn’t even consider it if my experience with NJH was better but ….
Regarding your specific questions, while on treatment I have my sputum tested monthly at my local lab. My sputum AFB tests have been negative since we started monthly testing, after one month on treatment. If that changes, I will likely send a sample by mail into NJH to get a count and susceptibility testing done. I did do a sputum sample at NJH when I was there earlier this month. As far as I know, none of my info at NJH gets funneled through my local doctor, so there is no issue with my local doctor “withholding” anything from NJH. Unfortunately my doctor at NJH hasn’t returned any of my local doctor’s phone calls so there has been ZERO communication between my local doctor and my NJH doctor (though my local doctor does review NJH’s after visit notes). Nor does anyone at NJH communicate with me directly outside of my in-person visits (other than the schedulers and billing dept). NJH posts test results in MyChart, but that’s it. No one responds to my email, no one calls to discuss test results, nada. If I am not sitting directly in front of my NJH doctor, there is no communication. Not optimal, obviously, which is part of the reason I am considering moving my care. With that said, NJH’s communication problems seem well documented, and as an institution they don’t seem at all concerned about it, so it is what it is, and patients have to decide what they will put up with. Communication does seem to vary based on doctor, and yes, I am also considering changing my doctor at NJH. I do agree that an NTM specialist is necessary. The difference between talking to my local infectious disease doctor and talking with my NJH doctor is like night and day in terms of expertise, it is undeniable. As a person and as a doctor generally I have come to really appreciate my local infectious disease doctor, it’s been a rough six months since starting treatment and she has been the only one showing up. She just isn’t an NTM specialist and as you point out its beyond a generalist’s resources to be up to date on all things NTM.
Replies to "@blm1007blm1007 my experience and opinion of NJH hasn’t changed, unfortunately. If anything, it has worsened. That..."
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@bayarea58 Thank you for sharing your experience with the all important and very much needed...good communication. Lack of communication is so frustrating. So sorry to hear all you experienced, to date, with NJH and the lack of needed communication. I remember who you did get to see so that is even more disappointing.
I don't know how I did it but I did get my lead doctor at NJH to call me at one point after my one time visit to NJH. I did kind of push hard via my messages on MyChart to those that were answering my messages before he called me. I had a pageful of questions that he took time to discuss with me.
The other difficult experience that one gal has experienced is finding out that two of the lead doctors she was assigned to left NJH. So she has had at least three different doctors. Now that's frustrating also. Dr. McShane, who I was seeing at Tyler, was at NJH and left to go to Tyler and as we know she left Tyler to go to the CDC.
My Story: I have been fortunate so far with receiving follow ups to my questions either by the very experienced nurse at Tyler, the nurse or doctor himself at Baylor, Dallas. As a matter of fact the local pulmonologist that I also see besides the Dallas and Tyler doctor called me last Saturday to discuss the MyChart message I sent to his office.
I am fortunate so far with being able to work it this way, three pulmonologists. I feel the more eyes on me the better. They may see some things differently but that allows me to hear different views and a bit more information and control. The local pulmonologist isn't in favor of my sending monthly sputum in for testing because I am not willing to go on the antibiotics due to my feeling well and my ability to clear the mucus easy. My MAI load is low and the sputum results two times came back no bacteria showing. I figure it's just hiding and will show it's little face again. So for me going to Tyler once a year will allow me to send sputum tests in monthly. Also, my local pulmonologist and I, on Saturday, discussed that Oklahoma U Medical Center recently designated a pulmonologist who will be concentrating on BE and IPD. We decided I should have a visit with this doctor also. That was Saturday and by Monday morning the scheduling office called me to set the appointment. For me the first visit with this new doctor will be more of my asking questions and interviewing. I want to know much about his time in and experience. I am hoping I will hear he has attended one or more of the National and World Bronchiectasis Conferences to hear the experts etc. If not, I believe my local pulmonologist is one of the most advanced of all the three with having treated patients with BE.
I just wish I could say that I feel they all have the knowledge and expertise that the NJH doctors come to know and understand in treating our disease.
For me I have much to think about, again, with the who, what and where after hearing your communication experiences with NJH. As said earlier I was/am thinking it might be good for me to go back up there. In my mind it would be for me to see if they feel I should start the antibiotics considering my present condition with no cavities, the low MAI, feeling well and no exacerbations. It's now three and a half years in with knowing I have BE.
So that's my story and experiences for now on this journey. It is so different for all of us, our BE and our doctor experiences.
Barbara