Should I keep my NJH appointment?

@ellenblythe What are your C Scans showing in terms of mucus or mucus plugs??
Not doing airway clearance at all, was that your personal decision or told to you by someone associated with a pulmonologist associated with a NJH, Mayo, NYU, Georgetown facility?
Interesting...and good to know for others who have hemoptysis.
Barbara

@blm1007blm1007 Hi Barbara, Dr. Haas at NJH told me to stop the airway clearance if I started streaking blood, which I did on about the 4th or 5th day. My Pulmonologist here at home absolutely did not want me doing it because if my history of hemoptisis. I don’t have much mucus and I don’t cough that much. Ironically Im coughing blood thia am!😖. Gotta go pack my ‘go’ bag….in case it gets worse.

@ellenblythe What are your C Scans showing in terms of mucus or mucus plugs??
Not doing airway clearance at all, was that your personal decision or told to you by someone associated with a pulmonologist associated with a NJH, Mayo, NYU, Georgetown facility?
Interesting...and good to know for others who have hemoptysis.
Barbara

Definitely GO. You have BE and that was the reason you got MAC. Reinfection rates are high. Keep nebulizing 2/daily with 7% saline. I don't believe NJH will do a consult with your Pulm doctor unless you're an NJH patient. They will communicate with your doctor after your visit, at least that was the case for me. I can give you an contact info for a home rental 3-4 short blocks from NJH and the rate is way better than any of the hotels.

@bayarea58 Did you do local sputum tests and counts prior to going to NJH? Were they coming back positive? Did you get on antibiotics? I sure get what your saying-but on the flip side. My local radiologist diagnosed me with a lung cavity, and antibiotics were started just 2 weeks prior to my first NJH appointment. I got to NJH and they had a number of NJH Radiologists (and other doctors) reviewing the CT I did there and they concluded it was not a cavity but an expanded BE airway. Also, my sputum sample that I had sent in previously showed a very low MABC count which allowed me to stop taking the antibiotics. I was on Nuzyra, Linezolid, and Amikacin. Prior to stopping the antibiotics-that were making me very sick, they practically decreased my doses by 50%. The following Monday-all antibiotics were stopped. Now watch and wait. I am SO HAPPY I went to NJH.

@bayarea58 Having read your post I was glad to hear your statement about how you did come to understand the ever so important facility, NJH, considering your original decision to go to NJH and how you felt immediately after your visit compared to now. We are so fortunate to have available, NJH. Sounds like a good plan that you have developed considering your HMO. You are also fortunate that you can afford the trip up to NJH and the financial aspect. As we both know so many of our BE buddies here on this Mayo Connect are restricted due to their insurance and finances. Due to everything you know, and as well what I have learned with seeing pulmonologists/doctors at NJH and then three different pulmonologists elsewhere that I have seen a few times,....NJH and the expertise they have is a blessing. Doctors at NJH are on top of things due to their entire set up and the many years and time dealing with respiratory illnesses. For those on the east coast I would think that Dr. Addrizzo Harris at NYU/Langone and Dr. Anne O'Donnell at Georgetown University also have the knowledge NJH doctors do...and more than likely doctors at Mayo have also. Their knowledge and a good lab to detect the exact bacteria one has is so important.

Granted on your last visit to NJH you did get to see your lead doctor at NJH....... I guess to discuss your the PFT and CT done at your HMO and to do a sputum test while you were there. Other than that are you sending sputum for testing to NJH during the other months? If so how are you getting the sputum test results from NJH that you possibly send in between your visit to NJH and how often are you told to have the sputum tested? Has MAC shown up in your sputum tests?

My concern is that if we do have a local pulmonologist who has an ego problem and thinks they know better than the doctors at NJH...we might not get the full information sent to them by NJH...and without seeing the information ourselves that they have been given, the local pulmonologist, they may withhold information and tell/give us only what they want us to know and basically give us there decision rather than the NJH decision. I believe I read that this is what happened to someone that posts on this Mayo site. So true: " there is no dispute that NJH’s expertise in this area is top-notch." I last night, before reading your post, began reviewing all and want to go back up to NJH after seeing three pulmonologist not associated with NJH, two in Texas and one in OKC. Generally speaking, but not all, in my experience the local pulmonologists are limited in having the needed information that is currently available due to their time schedule and not being able to put the time into learning all that the top nationally known pulmonologists are involved with. It is the exception (generally speaking) when one can find a local pulmonologist that keeps up with the learnings, new information, approaches and the possible reason why we hear so many on this site say: "I learned more from this site."
Barbara

@kathyjjb I am not sure what you mean by “the flip side” as your post seems to be making my point - different doctors read CTs differently. For this reason, I think it’s imperative to have doctors with expertise in NTM reviewing ones CTs. On this, we seem to agree. Regarding your specific questions, yes I had local sputum testing, yes they were (all) positive for MAI, no my local lab does not give counts so I didn’t get that info until NJH, yes, after my first visit to NJH I started treatment based on their recommendations.

@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.

@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

@kathyjjb I am scheduled for NJH this April. Can you please share your rental info?