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.

heathert | @heathert | Jul 18, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

@windwalker yip I think it was the pressing of the hand on them, I always had newsprint on my hands. It took alot of my time thats for sure.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 18, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

@tdrell Hi Terri, China is on my bucket list too. I have been to Japan
twice. I love Asian countries. Hopefully, I will feel like traveling
again.
 

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 18, 2017
In reply to @tdrell "Cilia my appt period at NJH started at 7am on a Thursday in January....routine blood work....a..." + (show)
@tdrell

Cilia my appt period at NJH started at 7am on a Thursday in January....routine blood work....a 6 minute walk in respiratory therapy to see if I needed Oxygen while there...an aide came down from adult day unit where you will have a room/bed/ to rest in between appts. Most days end at 5pm.you order no cost from menus in room all 3 meals. There are nurses on floor for teaching and meds if they start you there.
So I had appts on Friday then weekend with nothing going on....then appts the next week....Monday thru Friday....except one item I had for Wednesday was cancelled soooooo had a day off.
I stayed in hotels with shuttles since I had no car....so I used the list from NJH re hotels giving rates. If you have a car, you will save money by not having shuttle,.....parking is free at NJH.
They spread the appt over several weeks so they can add tests and appts as needed.
I had had a lot of tests done prior to arrival and had all sent in advance to NJh....none the less lots were added.
What other questions do you have? Tdrell

Jump to this post

 @cila Cila,
when you call the hotels and car rental places, ask them if they give a NJH
discount to traveling patients. You might also ask NJH if they know of some that
do. Also, ask NJH if they have accomodations on their site (can probably find
that on their web site) I know that the Mayo Clinic in JAX has onsite
accomodations and area hotels give discounts if you ask. Please let us know what
you find out. Also, you may consider http://www.AirB&B.com you can rent a room,
apt, or house, cheaper than hotel rates. I have stayed in three AirB&B
places and had very good experiences. - Terri
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 18, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

Andree, I was thinking along the same lines. If I do travel, only going to Europe and maybe lesser touristy places in China. I feel like some places are too exotic with exotic germs. My hubby has wanted to go on a cruise for years. I keep saying no. I am terrified of the amount of germs. There are just too many people onboard.

REPLY
Mariposa | @mariposa | Jul 18, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

Yes Terri, we had one friend who died from melanoma due to the cockpit radiation.
Hopefully they are doing some changes in these last years to protect the pilots.
Andree

REPLY
ling123 | @ling123 | Jul 18, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

@tdrell , @windwalker I grew up in Beijing, China but have lived in the Midwest (Wisconsin) for over 30 years. I came here in my early thirties. I had never had any allergy or lung troubles when I lived over there. The problem started showing up about 7-10 years after I've moved to Wisconsin. My mom, who is 96, and one of my brothers still live in Beijing. I travel every year to visit them. The best time to go, in my opinion, is last week of April - first week of June, or September - October for Beijing (don't know what the south is like at that time as I haven't traveled there during these times for a very, very long time). The smog is most likely present in winter. And dusty wind occur mostly in early spring (March - April). That's why I've not tried to go there in winter, except in 2006 when my dad died in January. I never get sick on my trip (I usually stay for 4 weeks). Even though I know the air quality is much worse than Wisconsin, somehow I never have any problem with that. At least no more than what I normally have over here, thick mucus. Absolutely no drinking water from the faucet, of course.

REPLY
tdrell | @tdrell | Jul 18, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

Ling123....do you live in SE wisconsin? I think that is where American Thoracic Society says is an NTM hotspot.Isnt the trip to Beijing like 24 hours from here? Wow....a 96 year old mom!!!! good maternal genes! has she ever come over to USA?
Tdrell

REPLY
ling123 | @ling123 | Jul 18, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

@tdrell No, I live in Madison and have been here the whole time since I moved to the States for graduate school. Love the city and have made it my home now. The flight from Chicago to Beijing is about 13 hours each way. Of course if you count in the time to fly from Madison to Chicago plus the connecting time at the airport, it is usually about 15-16 hours. I have been traveling to visit my family in China nearly every year since 1996. About good genes, it may be more complicated if you look at both sides of my genes. My paternal grandmother lived to 96. But she and all her 3 sons had diabetes. It didn't seem to affect her much as she was never even on any medication. But both my dad and his younger brother died of complications from the disease. But my dad still lived to 83. Not bad considering. When my dad was still living, he and my mom came to visit me and my middle brother (who lives in Richmond, VA) in 1997 and 2003. My dad suffered a stroke on the flight home after the second visit. He lived another 3 years, pretty miserably. So besides my lung problem, which really has not given me too much trouble with daily living, I'm doing my very best to keep my blood sugar in check. Several of my cousins on my father's side have already been diagnosed with diabetes. Family curse, as we call it. I was diagnosed with pre-diabetes about 4 years ago but the blood sugar has been within the normal range for the past 3 years after working hard on my diet and keeping active by playing tennis, hiking and walking. Whew, it's not easy. But compared to some of you guys on this forum who are fighting much harder fight with more severe health problems, I'm still the lucky one.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 18, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

Those are handy tips to know. Thank you Ling. I would like to visit areas of China that are not so touristy and perhaps has cleaner air. Mainly looking for older traditional villages, or places that haven't become Westernized.

REPLY
ling123 | @ling123 | Jul 18, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

@windwalker There are pros and cons of going for more or less touristy places in China. With places less developed, air may be cleaner, but there might be a whole different set of issues with bacteria, mold, and cleanliness of surroundings, such as hotels, restaurants and such. On the other hand, larger cities and more touristy places offer more modern facilities and easier access to medical care and any kind of supplies that one might need.

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