@cld120, do you have a first name .. more personal. I am REALLY glad you found us! Welcome! You may be new to MAC .. but trust me .. we have ALL been on this journey .. all of us at a different point .. but all on this shared journey .. we are here to help you .. support you in any way we can. We have "been there .. done that". Know how scary it is in the beginning .. BUT have come through that time .. KNOW there is a light at the end of the tunnel. Know what that light is? Knowledge! Knowledge is POWER! Knowledge is learning to advocate for yourself. Knowledge is TAKING BACK your power over your health care! How do you do that? By reading through the past pages of our Forum! Many pages? Phooey .. you will read a book for pleasure .. you won't read the past pages of this Connect Forum to educate yourself to our shared MAC disease?! Yes, of course you will! Then as you read .. feel free to come back with ALL your questions .. we are here for you EVERY step of the way. We know where you are right now .. how you feel .. how tough it is .. BUT we also know where you are going .. AND how you are going to get there!! BECAUSE we HAVE DONE IT!! We will walk this walk with you .. just keep coming back with your questions ,... concerns .. cares. We will be here. Sending you a hug in this tough time! Hope the below information is helpful! Katherine

From my File Cabinet:

MAC-TREAT OR NOT TO TREAT
I felt like my Mayo Clinic doctor put the 'puzzle' of to treat or NOT to treat with antibiotics JUST like a great big puzzle. The puzzle pieces were put together based on the results of the sputum culture results/Bronchoscopy if needed/CT scans/Xray/Pulmonary Testing. THEN deciding whether to treat with antibiotics NOW .. go to quarterly checkups, semi annual .. then to annual .. sometimes then back to semi annual checkups. It is ALL up to your GOOD Infectious Disease doctor who is (IF) KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up checkups to CONFIRM that the MAC in your lungs is STILL "stable"/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still "stable"! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene!

AND

It is not "easy" to get into Mayo or JNH .. BUT persistence pays!! Below are the contacts for getting an appointment .. if I was sitting in your shoes .. here is what I would do:
A. do the necessary initial contact effort at all 3 places Mayo Minnesota, Mayo Florida and JNA. -get an appt so you are on the books .. you can then take the soonest appt and cancel the others (DON'T quote me!) B. you ask if there is a cancellation list .. probably be told NO .. ask HOW you may get an appt sooner-GET THE PHONE NUMBER for the Appt Secretary for the MAC Pulmonary so you can call them directly! C. More than likely you will just have to be persistent .. calling FREQUENTLY to see if there has been a cancellation .. be NICE and get to know them!

MAYO CLINIC and JEWISH NATIONAL HEALTH CONTACT INFO FOR MEMBERS-TWO OPTIONS
1. MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63

They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. @windwalker, Terri shared 01/17 : Mayo Clinic in Jacksonville, Fl. and I see Dr. Jack Leventhal (pulmonologist) he has been a real blessing and life changer for me. The Mayo has an easy to use website with a "make an appointment tab. You do not need a referral. They have a dept to ask if your insurance will cover you there. They are a non-profit hospital, therefore, they don't gauge on pricing either.

(*FROM COLLEEN: There are few clinics that run at capacity at one Mayo location but perhaps not another. For example the Pain Rehab Clinic isn't accepting new patient in Rochester at the moment but they are in Arizona and Florida. As you can imagine, the capacity is constantly changing therefore I can't say for sure when which clinic is at capacity. I would tell members that if they can't get in at one location that they ask about getting in to another location. And yes, persistence may pay off.)

2. JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q. National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A. I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don't be afraid to call them and ask that question; they are extremely kind and professional. FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH......for the first 50 years of their existence....1898 til 1958 they did not charge clients..I am on Medicare....they accepted it fully....3 months after my trip....l have yet to see a bill....they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true....but it is there to help people. l beg you to contact them to check.

From member @tdrell, Terri : At National Jewish Health last week, all I did was show my Medicare card then my supplement card......no other mention of $/payments. I could focus my energy on the rigorous tests without worry about paying for pricey tests....especially as they were added.

@cld120 Keep trying to get an appt at Mayo. Ask to be put on their
cancellation list. Keep bugging them until they see you. An opening is bound to
open up. Or try another good institutution like Jewish National Health, Duke,
NIH, or others in Ca. if you can afford the travel. IBS is associated with auto
immune disease as is bronchiecstasis and MAC. Many of these disease go
hand-in-hand with co-morbidity. Meaning; they 'go together'.
 

Thank you so much, @katenm, for both the encouragement and great information/tips for getting a foot in the door!! My name is Carolyn, not sure why it's posting as it is with my initials.

Your initial comments are so helpful, especially knowing you and many others have walked this walk. It is terrifying/daunting to begin this journey based on much of what I have read on websites and in research journals/articles. I will definitely turn my attention to this forum to read & learn through others' experiences, as well!

@cld120 Welcome
aboard Carolyn! We are all here for you! - Terri M.
 

Hi Carolyn and welcome to our group! Funny you should mention the IBS along with MAC' because when I have looked up one, sometimes the other term pops up too. I have noticed over the years of my looking up the disease I have, I discover co-morbid diseases that tend to go hand in hand together. They fall under the umbrella of Autoimmune & Immunosufficent diseases. You are right to be concerned about taking the BIG THREE with your IBS issues. Those drugs can be harsh. (although some people have little problems with them). I know that the Mayo Clinic is overwhelmed with new patients, but you can make an appointment for way out in advance and then call them on a regular basis to get on the cancellation list. There are other good institutions that are about as close to you as Mayo that are also very good. I am not sure what medical facilities have a good reputation where you live to deal with MAC. Whomever you see, hold that thought that not all answers are getting put on the BIG THREE right off the bat. You can express your feelings about it to your Dr. Tell him/her that you have been educating yourself and what you have learned. Definitely open up that dialog.

Thanks so much for your reply & welcome. I am trying to learn as much as possible right now and this forum certainly provides a wealth of information. May I ask which Mayo location you were seen at and who your doctor is?

@cld120 i want to share that I emailed the mayo Jacksonville last week and as promised, they called me within 3 days and I'm scheduled for an appt August 15th. Very surprised how easy it was to get appt and with a doctor I read was well liked on this site. So that's my experience. Good luck. -Bonnie

Carolyn, I go to the Mayo Clinic in Jacksonville, Fl. and see Dr. Leventhal. I understand that they have become quite booked up lately in the Pulmonary Dept. You can try to get an appt there though. Their number for appts is 904-953-0853. Isn't there a very good research hospital in Lexington? I thought I saw there was awhile back. There are other Gold Standard places to go if you don't mind traveling to get to them.

Hi Bonnie. I am so glad that you got an appointment at Mayo! Is your appointment with Dr. Leventhal?

Yes, Dr Leventhal!