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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 7, 2017
In reply to @colleenyoung "FYI folks. This discussion thread is now 213 pages long with over 3100 posts. @KateMN is..." + (show)
@colleenyoung

FYI folks. This discussion thread is now 213 pages long with over 3100 posts. @katemn is being modest with 25-30 pages. What an amazing support and information exchange going on here. In addition to this main discussion, I like how you've started discussions according to specific subjects that are listed on the group homepage here: http://mayocl.in/2ouP4e8

Be sure to follow the group, to not miss any posts. Simply click the follow + on the group homepage.

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Yes! We are an amazing bunch Colleen!
 

REPLY
tdrell | @tdrell | Jun 7, 2017
In reply to @jentaylor "Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2..." + (show)
@jentaylor

Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!

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Terri M ...last September's NJH NTM workshop Videos took if I recall about 2 months to be released. Tdrell

REPLY
tdrell | @tdrell | Jun 7, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

Contentandwell well....it was hard for me to switch from original local Pulmonologist who was hostile re NJH and their outcomes...aside from NTM ignorance....he was thourough and nice.
Furthermore, I had to do some fancy actions to get into the one I go to now.
Tdrell

REPLY
tdrell | @tdrell | Jun 7, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

Lindam272...I would never have thought to question my asthma. It must be their routine there. The Methocholine Challenge test is done by a technician ...not complex.
A chum told me that she heard that 29% of people diagnosed with Asthma do not have it. Meanwhile I cringe to think that I spent $300 a month on the steroid inhalor Flovent and allowed more steroids into my body. Since off it....noted no difference!
Tdrell

REPLY
Katherine, Alumni Mentor | @katemn | Jun 7, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

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@128128terry11t, Terry and @bschaper2, Barb Hugs to all! Katherine
From my File Cabinet:
FILTERED RERIGERATOR WATER AND ICE CUBES https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx Don’t drink from built in refrigerator tap or use ice. High numbers of NTM are in refrigerator tap water and ice. In one instance, the DNA fingerprint of the isolates from the refrigerator tap water were identical to those of a patient who drank the water. The tap water coming into the refrigerator collects in a large reservoir and the warmth of the machinery warms the water (before cooling), so the reservoir has lots of NTM.
(Katherine: I am not saying it is right or wrong but I purchased the old time ice cube trays .. fill them from my sink filtration system .. then bag them into a Hefty zip lock gallon size bag for storage. I purchased the sink filtration system:
(1. iSpring CU-A4 - US Legendary - 4-Stage 0.1 Micron Ultra-Filtration Water Filtration System with No-pressure Chrome Faucet https://smile.amazon.com/iSpring-CU-A4-Ultra-Filtration-Filtration-No-pressure/dp/B009AEJWZG/ref=cm_cd_al_qh_dp_t 2.Kingston Brass Concord KS8198DL+ Single Handle Lead-Free Water Filtration Faucet, Satin Nickel https://smile.amazon.com/Kingston-Brass-KS8198DL-Lead-Free-Filtration/dp/B004KPL1BS/ref=cm_cr_arp_d_product_top?ie=UTF8 )
BUT was told you would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!! BUT something is better than nothing?!)

REPLY
Katherine, Alumni Mentor | @katemn | Jun 7, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

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@128128terry11t,
YOU SAID: I want to look into getting a shower head gizmo (don’t know what to call it) for my bathtub in order to wash and rinse my hair. Anyone have a recommendation? Hugs to all! Katherine

From my File Cabinet:
HAIR WASHING IN BATHTUB Several years ago I researched and purchased a kitchen sink faucet .. had a plumber install it (without the base) near the other bathtub controls. I have VERY effectively washed my hair in that manner ever since .. very happy with that method! I fold my towel on the tub edge for elbow comfort and I am good to go! (The one that worked for me: Ufaucet Commercial Stainless Steel Single Lever Single Handle Pull Out Sprayer Prep Kitchen Sink Faucets, Brushed Nickel Finished https://smile.amazon.com/Ufaucet-Commercial-Stainless-Sprayer-Finished/dp/B016I75C2Y/ref=sr_1_9?s=kitchen-bath&ie=UTF8&qid=1496861996&sr=1-9&keywords=kitchen+faucet )

REPLY
Katherine, Alumni Mentor | @katemn | Jun 7, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

Jump to this post

@bschaper2, Barb, DO NOT give up .. they ALWAYS have cancellations! Every few days .. in a nice friendly manner identify yourself and say "I understand that you always have cancellations .. just checking .. don't want to be a nuisance but I would REALLY like to get an appointment with Dr. Jack Leventhal .. so if you don't mind I'll just keep checking in periodically for a potential cancellation!" Good Luck! Hugs to all! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 7, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

Jump to this post

@bschaper2, Barb and @windwalker, Terri .. I bought a supply so I could sterilize just once a week! Hugs to all! Katherine
FROM my File Cabinet ..I found a good price got nebulizers at: http://justnebulizers.com/catalogsearch/result/?q=p22f81cn .. I purchased the 5 package.

REPLY
Katherine, Alumni Mentor | @katemn | Jun 7, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

@contentandwell .. JK, many on our Connect Forum can REALLY hear you .. SO many have had the very same experience .. sad but true .. on our Forum you will find that through our shared journey WE end up knowing MORE about our disease than MANY local doctors do .. it is a bit scary. BUT that is the very reason I stress being your OWN best advocate .. educating yourself .. doing your OWN "due diligence" .. if it is to be .. it is up to You!! Just be happy you found this wonderful Community of knowledge and support .. happy you found us! Hugs to all! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 7, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

@windwalker, Terri Colleen took care of it! Plus gave me good instructions for my File Cabinet for the Future. Hugs! Katherine

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