Hi Katherine

I cnt get sputum sample even with a test at hospital to force sputum up. Didn't wrk for me. Diagnosed recently with Mac. Diagnosed already few months ago with bronchioectasis. It seems that a bronchoscope is the only means??? Should I be on a nebulizer with saline to help. Right now I have no symptoms of anything. No cough, little sputum. Use aerobika daily anyway. Pulmologist recently said have lost 1/3 lung capacity. He thinks have had for awhile. Getting referral to infectious disease guy asap. Might end up at Mayo eventually.. our insurance won't cover. Am from Toronto .

@megan123, Jennifer, question: how did you get diagnosed with MAC? Make SURE your referral to an Infectious Disease doctor is ALSO treating OTHER MAC patients so they know what the heck they are talking about!? ASK them: How many MAC patients have you treated in the past 12 months?! Sorry to be so tough but YOU have to be your own best advocate now in this situation! If you have indeed lost 1/3 of your lung capacity .. YOU have to be your OWN best advocate at this point .. nobody is going to do it for you. Read through the past pages of our Forum ..I promise you .. you will end up knowing more about our shared MAC disease than MANY doctors know! Then do your "due diligence" .. write our a list of questions to ask this new Infectious Disease doctor.

Note what Member @steve1948, said: NEBULIZER WITH ALBUTEROL My doctor prescribed "Sodium Chloride" (which amounts to nothing but a salt solution) to add to my Abuterol in the nebulizer. It definitely makes one cough, and helps a productive sputum for me, not as much as I'd like but every little bit is a blessing. Might you ask your current doctor for this? Definitely the Albuterol would open your airways.

Don't know if this would help you .. but I found this:
Canadian Citizen
As a Canadian citizen, here are some frequently asked questions for patients from Canada, including what to bring and how Mayo would work with your provincial plan http://www.mayoclinic.org/canada/faq

Jennifer, I do hope some of the above might help you .. know that I am thinking of you .. PLEASE keep us posted! Sending you a hug in this tough time! Katherine

thank you everyone for the useful info on all the ways to get sputum... I agree with the other member that the cough with pseudemonas is very different from the MAC cough - it is much more "violent", hurts the ribs, and really productive. I could cough up a good one quarter cup of stuff in 15 minutes - color was off white, gray maybe a bit greenish, but mostly grey - and very thick and mucousy... much worse when I first lay down to sleep and would cough violently. It was my GP doctor who ordered the test as my pulmonologist, even though I told him about how much I was coughing, never thought to order the test. So if anyone out there with MAC is still coughing a lot, it can not hurt to have your sputum tested for pseudemonas, just to rule it out. The drug really targets it and it did clear up within 3 weeks. Thank you Katherine for the info on harmonica therapy! Pamela

<br><br><br><br><br>Hi there.  Diagnosed thru bronchioscopy.  Pulmonary Dr has made no referral to infect...Dr, so I will for a second opinion.  Tk u for your help Katherine.  I am scared about all this.  Your system is better in states. Wait lists for specialists is crazy.<br>  Just wondering if I can afford Mayo ....hopefully it's reasonable❤️<br><br>

@megan123, Jennifer, I KNOW it is such a scary time .. we ALL have walked this walk before .. that is why we are all here for you. Here are two options .. either one is EXCELLENT .. whichever one you can get into first/easiest .. you go Girl! Just get started .. do your due diligence .. NO one cares about your body as much as YOU DO .. take good care of it so IT can take good care of you for the rest of your lifetime!

A WORD FROM MEMBER @windwalker Terri I will be going out on a limb here by saying this, but I feel compelled to. I have lost precious lung function over the years by seeing 'the best pulmonologists in the city', of any city I have lived in. This is lost lung function I will never regain. I have found that many drs (with great references) are not really staying current, nor have the time for delving into specifics. Lungs are the most delicate organs you have, I would not trust them to just anybody. Only go to highly reputable medical centers that are cutting edge. i.e. Mayo, NIH, JNH, John Hopkins, to name a few on the east coast. - I sincerely hope I did not offend anybody. I know there are good drs out there, but they are hit or miss in the 'for profit' segment.
This said Jennifer .. GO FOR IT!! Below are two GREAT options! Print it out and DO IT! Good luck!

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.
* Minnesota campus for an appointment, here's the number: 507-538-3270
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.

For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s

*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.

*MEDICARE: Mayo Clinic accepts new Medicare patients. Mayo Clinic is one of the largest Medicare providers in the country. Unfortunately, we can’t honor all requests we receive from Medicare patients who want to come to Mayo Clinic. We accept Medicare patients in all parts of our practice where we have the capacity to accommodate them and most importantly, as the medical needs of these patients require. Again, 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. MAYO .. AND MEDICARE https://connect.mayoclinic.org/discussion/medicare-and-mayo/

MAYO CONTACT INFO ..NON PROFIT PRICING STRUCTURE
If you seek help at non-profit institutions like the Mayo or John Hopkins, to name a few; their price structure is lower than the for profit medical institutions. Sometimes they will work will you on payment. They will price out the services before you receive them if you ask. I know that people come from all over the world to go to the Mayo. They have a special dept that handles that.

*From Colleen: Here is information about Mayo Clinic's Billing and Insurance http://www.mayoclinic.org/patient-visitor-guide/billing-insurance which includes information about Charitable Care and Financial Assistance at Mayo Clinic http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

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. You will have an excellent experience.

Jennifer, I hope the above helps .. keep us posted .. we have all been on this same MAC journey! Hugs to you at this tough time! Katherine

<br><br><br><br><br>Tks for all the support.  U guys r amazing.  I'm very scared about all this.  Need to tell my children still.  They r in there late 20's.  It all seems like a bad dream, but I know what I have to do❤️<br><br>

@megan123, Jennifer, remember the mantra "Put my energy into what I can control .. and let go of what I CANNOT control .. the outcome.". That means for you right now Jennifer .. putting your energy into getting an appointment with the best medical care you possible can .. collecting all the medical records you need (this is VERY important so no extra testing is done plus a good history is established) .. THEN letting go of the outcome .. for it truly IS out of your control. We are all behind you in this our shared journey .. ask any questions that may come up .. keep in mind it truly is NOT a bad dream. When I was diagnosed a very wise lady told me:

"If we all put our troubles in a great big circle .. more than likely EACH OF US would take back OUR OWN troubles!"

Jennifer, my husband and I remind ourselves .. we have NOT lost a child .. we have NOT lost a grandchild .. now THAT would be a TROUBLE. YES, WE WOULD take back our OWN troubles .. including my MAC diagnosis! Just give that wise woman's story some thought .. I did and it gave me comfort. Hugs to you! Katherine

Hi Pam, I have copd and IPF cough violently and all day. My doc's tell me I shouldn't be coughing like that with my condition. So I ran across the MAC posts and did some research on it. It said it takes 15 to 18 months on three types of meds to cure the MAC although a few weeks to a few months the patient could see results. They said that the patient needs to show no MAC in the sputum samples for 12 months before they consider it cured. They emphasized not to shorten the medication time because if it comes back it becomes somewhat a super bug, and takes the same treatment with additional medication. The side effects of the medication don't sound pleasant, did you experience any? I've brought the MAC subject to the attention of my doc at the Cleveland Clinic, and we"ll see where that goes. Thanks for the info.

Hi Katherine. I have used the Aerobika for years now and the top"+" is too strong for me. I use #2. So you may be right that the product should be bought thru the website. It may be more expensive but they seem to hold up very well. I have also spoken with the company when they first came out and they couldnt have been nicer.

On another note just got back from Mayo Florida. Had alot of testing. I return in March for a bronchoscopy. They need to sample a nodule that may be the return of NTM or something else. I was prescribed oxygen when needed and now have to nebulize twice daily with saline/aberterol. That is all for now until after bronchoscopy.
I was so pleased with Mayo- doctors, nurses, receptionists. Should have gone there sooner. Have a great day, y'all!

Greetings all!
Maryjo's post brought up a question for me. I have been on nebulizer 7 months. I do albuterol and budesonide meds with it. but it's getting very tiresome. Does anyone know if a portable inhaler of those drugs would be as effective for my bronchiectasis as the nebulizer is?
Thanks and blessings,
David