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Should I keep my NJH appointment?

Posted by sjlatham @sjlatham, Feb 8 3:10pm

I was diagnosed with BE and MAC Infection in 2024
My pulmonologist wanted me on the big three antibiotics and my infectious disease Dr said wait. CT got worse with spreading opacities pulmonologist said go on antibiotics. ID Dr said wait.
last November ct scan was very much improved with residual scaring. Doing airway clearance every other day. I really don't have anything to
Cough up but I never really did . I have an upcoming appt at NJH and am
Wondering if I should keep it or reschedule for
Later. I'm exercising and at a normal weight. I do have some pressure in the evening in my chest but not bad, I do clear me throat a lot. Don't know if that means anything. Just don't know if I should spend a week at NJH doing testing if my
Last ct scan was much better. I'm confused

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sjlatham | @sjlatham | Feb 11 6:46pm
In reply to @rozie83 "@sjlatham No problem. Please don't hesitate to ask any questions. I had to idea what to..." + (show)
Profile picture for rozie83 @rozie83

@sjlatham No problem. Please don't hesitate to ask any questions. I had to idea what to expect. So it's helpful to have someone who can answer your questions. Good luck. Where do you live? Is it a long way from Denver? I am in Arizona.
Roz

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@rozie83 I'm in Oklahoma. My daughter lives in Prescott though
I really appreciate the comments it help me decide.

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rozie83 | @rozie83 | Feb 11 9:22pm
In reply to @sjlatham "@rozie83 I'm in Oklahoma. My daughter lives in Prescott though I really appreciate the comments it..." + (show)
Profile picture for sjlatham @sjlatham

@rozie83 I'm in Oklahoma. My daughter lives in Prescott though
I really appreciate the comments it help me decide.

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@sjlatham
glad it helped. Good luck. I've never been to Prescott, but my neighbor's daughter also lives there. I've also never been to Oklahoma. Roz

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blm1007blm1007 | @blm1007blm1007 | Feb 12 9:27am
In reply to @bayarea58 "@sjlatham I was felt fine at diagnosis. My local doctors repeatedly told me I was “stable”..." + (show)
Profile picture for bayarea58 @bayarea58

@sjlatham I was felt fine at diagnosis. My local doctors repeatedly told me I was “stable” (based on 4 CTs). I went to NJH, nope, progressive cavitary disease. Again, I felt totally fine. I have learned that feeling fine is not the whole story and having an accurate understanding of our conditions is imperative. I myself would not (and do not) rely on my local doctors for an accurate assessment of my NTM infection. I feel so strongly about this I self pay for my care at NJH, as I am part of an HMO that refuses to refer me out. So, in my opinion, I agree with the others, I would go. Also keep in mind you don't necessarily need to repeat testing you have already had done. Some testing, ie sweat test, is one and done, other testing needs to be updated from time to time (CTs, PFT). Because I am a self pay patient at NJH, I did all the necessary testing at my HMO while I was waiting for my first NJH appointment, to keep my out of pocket costs down. The only testing I did at NJH was sputum testing (because their lab gives more info). I had to do a lot of leg work to understand what needed to be done and push my local doctors to do it, but when I got to NJH they confirmed that there was no further testing they would recommend for me. I just got back from my 6 month check in at NJH and again the only testing I did there was sputum tests. I got an updated CT and PFT with my HMO before my NJH visit. I am not saying this is the best approach, I would much rather have the radiologists at NJH review my CTs, but only to say there is not one way to approach your time and investment at NJH, and to encourage you take initiative to approach the visit in a way that works best for you. But yes, I would go. As others have said, even if they confirm everything you think you already know, that would give me great peace of mind. But I suspect you will learn things you didn’t know about your circumstances, there is no dispute that NJH’s expertise in this area is top-notch.

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@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

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sjlatham | @sjlatham | Feb 12 11:03am
In reply to @rozie83 "@sjlatham glad it helped. Good luck. I've never been to Prescott, but my neighbor's daughter also..." + (show)
Profile picture for rozie83 @rozie83

@sjlatham
glad it helped. Good luck. I've never been to Prescott, but my neighbor's daughter also lives there. I've also never been to Oklahoma. Roz

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@rozie83 stay well!
Prayers for your health

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kathyjjb | @kathyjjb | Feb 12 11:24am
In reply to @bayarea58 "@sjlatham I was felt fine at diagnosis. My local doctors repeatedly told me I was “stable”..." + (show)
Profile picture for bayarea58 @bayarea58

@sjlatham I was felt fine at diagnosis. My local doctors repeatedly told me I was “stable” (based on 4 CTs). I went to NJH, nope, progressive cavitary disease. Again, I felt totally fine. I have learned that feeling fine is not the whole story and having an accurate understanding of our conditions is imperative. I myself would not (and do not) rely on my local doctors for an accurate assessment of my NTM infection. I feel so strongly about this I self pay for my care at NJH, as I am part of an HMO that refuses to refer me out. So, in my opinion, I agree with the others, I would go. Also keep in mind you don't necessarily need to repeat testing you have already had done. Some testing, ie sweat test, is one and done, other testing needs to be updated from time to time (CTs, PFT). Because I am a self pay patient at NJH, I did all the necessary testing at my HMO while I was waiting for my first NJH appointment, to keep my out of pocket costs down. The only testing I did at NJH was sputum testing (because their lab gives more info). I had to do a lot of leg work to understand what needed to be done and push my local doctors to do it, but when I got to NJH they confirmed that there was no further testing they would recommend for me. I just got back from my 6 month check in at NJH and again the only testing I did there was sputum tests. I got an updated CT and PFT with my HMO before my NJH visit. I am not saying this is the best approach, I would much rather have the radiologists at NJH review my CTs, but only to say there is not one way to approach your time and investment at NJH, and to encourage you take initiative to approach the visit in a way that works best for you. But yes, I would go. As others have said, even if they confirm everything you think you already know, that would give me great peace of mind. But I suspect you will learn things you didn’t know about your circumstances, there is no dispute that NJH’s expertise in this area is top-notch.

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@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.

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ellenblythe | @ellenblythe | Feb 12 11:55am
In reply to @sweethighland "@ellenblythe , hello, I do cough up blood from time to time as well, but not..." + (show)
Profile picture for sweethighland @sweethighland

@ellenblythe , hello, I do cough up blood from time to time as well, but not from MAC from another bacteria. How are you managing your airway clearance?

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@sweethighland I don’t do any airway clearance at all. Its too aggressive and could start a hemopsysis episode which means a trip to the ER. I don’t have much mucus and I was told this practice is good hygiene but really not curative for MAC

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Profile picture for linda1334
linda1334 | @linda1334 | Feb 12 4:33pm
In reply to @ellenblythe "Absolutely keep that appt! They are THE place with the published experts. I saw Dr. Haas,..." + (show)
Profile picture for ellenblythe @ellenblythe

Absolutely keep that appt! They are THE place with the published experts. I saw Dr. Haas, she is excellent. I can’t do airway clearance because it causes blood to come up. Hemoptysis has been a big problem for me and I don’t see many others share that. BTW, so many of you talk about the big three antibiotics. Would somebody please tell me what those are because I’ve been on at least five different ones. One of them was Ethoniamide which even Dr. Haas thought was hard-core. The administrative side of National Jewish was kind of messy for me, but the doctors are incredible. Good luck.

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@ellenblythe The big 3 are azithromycin, rifampin, and ethambutol.

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linda1334 | @linda1334 | Feb 12 4:47pm
In reply to @bayarea58 "@sjlatham I was felt fine at diagnosis. My local doctors repeatedly told me I was “stable”..." + (show)
Profile picture for bayarea58 @bayarea58

@sjlatham I was felt fine at diagnosis. My local doctors repeatedly told me I was “stable” (based on 4 CTs). I went to NJH, nope, progressive cavitary disease. Again, I felt totally fine. I have learned that feeling fine is not the whole story and having an accurate understanding of our conditions is imperative. I myself would not (and do not) rely on my local doctors for an accurate assessment of my NTM infection. I feel so strongly about this I self pay for my care at NJH, as I am part of an HMO that refuses to refer me out. So, in my opinion, I agree with the others, I would go. Also keep in mind you don't necessarily need to repeat testing you have already had done. Some testing, ie sweat test, is one and done, other testing needs to be updated from time to time (CTs, PFT). Because I am a self pay patient at NJH, I did all the necessary testing at my HMO while I was waiting for my first NJH appointment, to keep my out of pocket costs down. The only testing I did at NJH was sputum testing (because their lab gives more info). I had to do a lot of leg work to understand what needed to be done and push my local doctors to do it, but when I got to NJH they confirmed that there was no further testing they would recommend for me. I just got back from my 6 month check in at NJH and again the only testing I did there was sputum tests. I got an updated CT and PFT with my HMO before my NJH visit. I am not saying this is the best approach, I would much rather have the radiologists at NJH review my CTs, but only to say there is not one way to approach your time and investment at NJH, and to encourage you take initiative to approach the visit in a way that works best for you. But yes, I would go. As others have said, even if they confirm everything you think you already know, that would give me great peace of mind. But I suspect you will learn things you didn’t know about your circumstances, there is no dispute that NJH’s expertise in this area is top-notch.

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@bayarea58 I'm in So. CA and the same boat as you and on a Medicare Advantage HMO at this time. My pulmonologist who did my bronch and ordered my CTs says no cavitary disease and everything is stable right now. I was considering changing to a Medicare Advantage PPO this year which would allow me to visit NJH as it's in their network, but elected to stay on this HMO for one more year because the monthly payment for my Afflo vest is covered in full. At the end of this year, I'll own the vest and will then probably change to the Medicare Advantage PPO so I can schedule a visit to NJH.

The info you posted about getting all the testing done here and then going to NJH if you're on an HMO is very helpful. I decided to try and wait until next year because I feel fine right now and am doing my airway clearance with 7% saline and vest twice a day as well as exercising by walking briskly for 3 miles each day. But if something comes up or things change this year, I will keep the info you provided about getting the tests done here in mind. Thanks for that!

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Profile picture for ellenblythe
ellenblythe | @ellenblythe | Feb 12 6:34pm

I did most of the tests near home too, before going to Denver. Its a ridiculous number of things they want; this is to get as many baseline numbers as possible in the event you go on treatment they can track whats happening to you.

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Profile picture for blm1007blm1007
blm1007blm1007 | @blm1007blm1007 | Feb 13 10:17am
In reply to @ellenblythe "@sweethighland I don’t do any airway clearance at all. Its too aggressive and could start a..." + (show)
Profile picture for ellenblythe @ellenblythe

@sweethighland I don’t do any airway clearance at all. Its too aggressive and could start a hemopsysis episode which means a trip to the ER. I don’t have much mucus and I was told this practice is good hygiene but really not curative for MAC

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@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

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