Coordinating between NJH and your regular pulmonologist and ID doctor
I have an appointment in early April to visit NJH. I am very thankful for the opportunity. I'm wondering how the process works after you return home. Does your regular pulmonolgist and ID doctor just read the notes? Do you email NJH if you have a question or problem and copy your local medical team? What does follow-up look like after a visit to Denver? Do most people go just once or return periodically? Thanks for your insights! Jennifer
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
I'm currently on the Big 3 and go to NJH every 6 months. I'm also based in AZ, so I simply fly out early in the morning and am back home by late evening. I have a local pulmonologist with whom I meet every few months for script updates and check-ins and he is the person I would consult in the event of a non-MAC respiratory issue. However, I control all the info regarding my NJH tests and check ups and forward to my local pulmonologist when I see him.
Best wishes to you too and appreciate the information above! I am going for 7 days in May!
Hello, Sounds like a wonderful place. Just curious, have you ever been to Mayo, and if so, what was your experience? Thanks
I have not been to the Mayo Clinic. My ID doctor in Charlotte spoke highly of only NJH and encouraged me to seek their input for a second opinion when I was diagnosed after my Bronchoscopy in 2020. There are plenty of others in this forum who have personal experience with Mayo. Stay well.
Regina
NJH sounds like a terrific specialty hospital.
I have been recently diagnosed and am in the Chicago area and trying to find a great pulmonologist here. I also am currently on a hmo and thinking of switching to original Medicare with supplement. Although I have very mild symptoms I’m thinking if and when this progresses I should have health insurance that allows me to choose my own doctors. Just wondering if you’ve come to the same conclusion. Thanks so much!
I agree with your thinking (for the future). Firstly, bravo that you have mild symptoms…keep up the good self care. Second, you definitely need the best home town pulmonologist/and ID doctor to work together for your best plan of care and treating flare ups or new symptoms if they present. The strongest, best in their field, specialist, have the confidence in their work to support second opinion and team participation for excellent patient care (it actually takes some pressure off them to share the work load). So getting evaluated in another “speciality clinic/hospital “ should be agreeable.
Last, yes…I have Medicare and a very good supplement…this has allowed me to pick and go where I want. However, I do not like surprises from the financial departments in hospitals, so I always check that they have “authorized” my visits and treatments. Even the best hospitals sometimes “miscode” diagnostics and then insurance will not pay. Never hurts to get answers first.
Good luck and stay well.
Regina
I am in a similar situation- was thinking I would have to go with traditional Medicare but was pleasantly surprised to find out some of the advantage plans allow you to see other doctors- I live in MO and was told NJH was in network.
Thanks for getting back to me so quickly!
Good to know that some of the advantage plans cover NJH. I’ll go ahead and check into which advantage plans will cover there. Thanks again!
Hi! I have bronchiectasis, MAC and Aspergillus...Aspergillus treated a year ago, never treated for MAC because I have been very healthy, active with good numbers. I contracted HMPV at Christmas though and became very, very sick. Hospitalized. Took 2 months to recover and I am about where I was but Aspergillus back and MAC now morphed into sub species abscessus. Discussing options now with 2 pulmonary in Houston area. Here is my question. It was recommended I try to to set up telemedicine /2nd opinion appointments with Mayo and NJH. Is anyone familiar with this type appointment? My husband has early Alzheimer's and all the logistics coming and going can be overwhelming especially if I am tied up there. Please let me know if anyone has info on this. I am not sure if I posted this correctly 😎 I have never asked a question before! Thank you!
Hi, I did telemedicine a couple of times during Covid, it was helpful to have my list of questions written down and to check off as they were answered. I didn’t do this, but it may be helpful to have a medical type friend in the room to take notes.