Non-Mayo Pulmonologist Recommendation

I guess that maybe why I have been unable to get an appointment at Mayo (Jacksonville) following my MAC diagnosis. Sad, because I really wanted their opinion.

@brglassman, I'm wondering if you might check the information you were given about being followed by a pulmonologist at Mayo Clinic Jacksonville. Or perhaps I'm not understanding your message correctly. You said, "I was told that the entire pulmonology department at Mayo clinic in Jacksonville is comprised of Interventional pulmonologist and patients are not followed by the Mayo Clinic Pulmonology Department in Jacksonville."

You're correct that the pulmonary team includes a interventional pulmonologist as well as pulmonologist experts and fellows who follow lung patients. I might suggest calling back to get clarification or talking with someone from the Office of Patient Experience.

I completely understand your desire to have all your health care needs followed at Mayo, in one system. Are you currently a patient in pulmonology?

@mashewske, were you diagnosed with MAC at Mayo Clinic?

I was Diagnosed following a bronchoscopy to confirm the
Pulmonologist belief in Tallahassee

@colleenyoung The attached picture is the portal message that I received from the nurse for the Mayo Clinic Interventional Pulmonologist that diagnosed my Excessive Central Airway Collapse (ECAC). The nurse is telling me to establish a relationship with a community Pulmonologist because Mayo Clinic pulmonologists only consult, not follow. I'm assuming that the nurse, a BSN, RN, AMB-BC, knows what she is talking about.

As for whether I'm CURRENTLY a patient in Pulmonology, I don't know. Pulmonology has "consulted" so does that mean that they're done with me. It appears that the doctor that diagnosed my Excessive Central Airway Collapse (ECAC) is done with me as he has made a diagnosis and recommended that I see a Thoracic surgeon.

It's a slippery slope when Mayo Clinic starts telling patients to get treatment outside the Mayo Clinic system for things that Mayo Clinic can handle. Once patients go outside the Mayo Clinic system they are introduced to other healthcare systems, systems that may work better for patients who want to have all of their care in one place. Maybe I just need to move on to Baptist, St. Vincent's, or UF Health.

My experience with Mayo Clinic is that it depends on the health issue. Issues requiring ordinary follow-up are encouraged to be done locally while complex health conditions utilizing Mayo expertise are followed by Mayo. Mayo Clinic is a research institution and teaching hospital. If they did routine follow-up, they would not have the ability to see as many patients. They see patients from many faraway places, so local follow-up is the norm I expect

@vic83 The only reason that I'm questioning the apparent lack of continuing care by the Pulmonology Department is that I'm being followed by every other department at Mayo Clinic (Jacksonville) for every other chronic health condition that I have (Neurology, Cardiology, Ophthalmology, Gastroenterology, Urology, Sleep Medicine, and others).

Also, I live in Jacksonville so Mayo Clinic (Jacksonville) is my local health care provider.

Finally, with all of my chronic conditions, complicated by the facts that (1) I'm getting close to 70 years old, and (2) I've had Bariatric surgery which causes me to metabolize food, beverages, vitamins, minerals, and medication differently, I'm a complicated medical case so I need to be followed by specialists in an integrated system where the various departments talk to each other and all have complete access to my voluminous medical records. If anything, with the complexity of my situation I'm a perfect case to be cared for at a teaching hospital. I'm what you would call a "head scratcher", someone who's hard to treat because of all of the interrelated health conditions.

@colleenyoung

@brglassman, the portal message you attached does seem quite clear, doesn't it? Like you, I would question the information you've been given in your case given Mayo Clinic Jacksonville is your local health care provider. I encourage you to call the department for clarification. Or contact the Office of Patient Experience
Phone: 844-544-0036 (toll free)
Website: https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Email: opx@mayo.edu

@vic83, you're absolutely right that Mayo works with local care providers when patients have travelled from afar for specialized care at Mayo Clinic.

I understand your need for cohesive care and the communication between specialists. I had Mayo make my cardiology procedure decision to not interfere with my future lung cancer treatment options especially if there should be complications.
Had not thought about the term "interventional pulmonology and looked it up. https://www.webmd.com/lung/interventional-pulmonology-uses-effects

Following up on this discussion with more information about the services provided by Interventional Pulmonology vs. the Pulmonary Department.

Interventional Pulmonology is a procedural practice. This means the physician (intervential pulmonologist) sees a patient to assess what procedure needs to be done. S/he does that procedure, comes up with a diagnosis and plan of care. Care is then turned over to a local pulmonologist (or Mayo pulmonologist) who works with the patient to implement that plan of care. The local pulmonologist will contact the interventional pulmonologist again if needed.

Mayo Clinic's pulmonary department (not interventional pulmonology) does follow patients for ongoing care for chronic disease such as interstitial lung disease (ILD), COPD, cystic fibrosis, pulmonary hypertension, etc.