1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

ling123 | @ling123 | Jul 27, 2017
In reply to @katemn "Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that..." + (show)
@katemn

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

Jump to this post

Dear Katherine, many thanks to your for the countless hours you have spent on being the mentor of this forum. You have paved a solid path for us to follow. You are truly an amazing person with the biggest heart and the wisest advice for everybody you come across. Please know that there is endless appreciation and love for you from all of us whom you have tirelessly mentored. Please take very good care of yourself. You will be in our thoughts and our hearts always. Big hug right back. 🙂

REPLY
heathert | @heathert | Jul 27, 2017

@katemn Sorry to hear that Katherine, thank you so much for what you have done for all of us over the years, now is time to take care of you and we all understand. Sending you lots of well wishes and hugs hugs hugs!!!!!!

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chinasmom | @chinasmom | Jul 28, 2017
In reply to @katemn "Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that..." + (show)
@katemn

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

Jump to this post

Dearest Katherine, Thank you so much for such great information with a gentle heart. It is time for you to focus on your own health. Please know that you are loved!
Becky

REPLY
ginak | @ginak | Jul 28, 2017
In reply to @katemn "Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that..." + (show)
@katemn

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

Jump to this post

Thank you for all you've done and know that you're in my prayers.
Gina K

REPLY
irene5 Irene Estes | @irene5 | Jul 28, 2017
In reply to @katemn "Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that..." + (show)
@katemn

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

Jump to this post

Yes - ditto that and having constantly reminded us to do our due diligence which has ramifications in all areas of our life. Knowing our limitations is sometimes a hard pill to swallow, but recognizing that can lead to profound inner peace. Thank you Katherine! God's blessings. Irene

REPLY
nannette | @nannette | Jul 28, 2017
In reply to @katemn "Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that..." + (show)
@katemn

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

Jump to this post

@katemn, Katherine thank you for your generosity of spirit to everyone. If anyone has taught us about due diligence it has been you. You have changed the way I now deal with all my medical issues. Please take care and even if you can't be a mentor I hope one day you'll be able to come back and say hi to us. We will miss you so. Take care. Nan

REPLY
terryb1 | @128128terry11t | Jul 28, 2017
In reply to @katemn "Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that..." + (show)
@katemn

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

Jump to this post

You are in my daily prayers and words do not even begin to address what you have meant, and continue to mean, for all of us on this forum. Your intellect, spirit, and joy with life were evident through all your encouragements and advice. Wishing you and your husband a smoother road to wellness. Terry

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 28, 2017
In reply to @katemn "Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that..." + (show)
@katemn

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

Jump to this post

Katherine @katemn

As a fellow Mentor, I'm so sorry that you are leaving us! Your warmth, caring and broad-based knowledge have been a help and inspiration to those in the MAC group and also to your fellow mentors. We will miss you, but I understand that there is a season for all things and you know best what is in your best interests and you also know how to care for yourself.

My best wishes and prayers go with you my friend!

Teresa

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 28, 2017
In reply to @katemn "Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that..." + (show)
@katemn

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

Jump to this post

Dearest Katherine, It is with tears that I write this, it pains me to know that you are no longer well enough to be here with us on our forum. We thank God for you, and are grateful that we will have your past posts to fall back on. Besides being the best mentor EVER for dealing with this disease, you have mentored me on a personal level as well. It is because of YOU that we have such tight bonds here. Please rest easy knowing that we will take care of each other. Godspeed my friend. - Terri M.

REPLY
boomerexpert | @boomerexpert | Jul 28, 2017

@katemn: Well, m'dear, you did what few in life take the time, and have the compassion to do...pulling people together, giving them hope in the face of a fearful diagnosis, helping others even as you handle the same health issue yourself. I am proud to have become a part of this forum under your tutelage, and will always have my "Kate" voice helping me to determine the best response to others' concerns.
My wishes for you and your husband are, and will continue to be, improved health, and on-going happiness.

REPLY
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