(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@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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Dear dear Jen Taylor…..I am sending the white light right now to you so that you get a smattering of hope and a pinch of energy!!!
Feeling discouraged /down is a totally appropriate feeling for what you have been going thru these years…..and added to the mixture is the unknown of the future. It is sooooo good you feel comfortable with us and can express how you are feeling!!! I speak for myself…and probably many others in the group…when I say we not only sympathize but totally empathize with You!!! Our dear Katherine would I am sure direct you to do something soothing …..music…a movie etc and a big pat on your back for amazing problem solving and seeking for the best route for optimum care!
Tdrell

REPLY

Jen Taylor and Paula….to add to the comments re Drs not agreeing re treating MAC ….I have had sort of same experience with Drs disagreeing….I had to find a new Pulmonologist locally….he refused to agree wth NJH ‘s decision not to treat me with antibiotics . The new one agrees with NJH. I am still amazed that the ID Dr that I was sent to by former pulmonologist would have begun me on the 3 antibiotics within one minute of meeting me….she had begun to write out prescriptions til I said ” wait…I am going to NJH ”
I must also add that when I compare the details of 3 different chest CAT scan reports ….10 years ago….1.5 years ago and then this past January . The one done at NJH contained 10x more info/interpretations as well as guidelines for future scanning!! The person reading the scan at NJH had by his name”Certified in thoracic reading” …maybe this is the difference? Regular radiologists vs further specializing in body areas.tdrell

REPLY

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

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@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

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Lindam272…. I am out of town til mid week….when I get home I will try to locate the comments. On the NJH CT scan.
I have had varying sized nodules from 10 years ago which at that time according to the Fleischner …sp …guide did not require follow up. The guide was printed right on the report and can be googled ( This subject was brought up awhile ago on this site)
So please await more from me.tdrell

REPLY
@tdrell

Jen Taylor and Paula….to add to the comments re Drs not agreeing re treating MAC ….I have had sort of same experience with Drs disagreeing….I had to find a new Pulmonologist locally….he refused to agree wth NJH ‘s decision not to treat me with antibiotics . The new one agrees with NJH. I am still amazed that the ID Dr that I was sent to by former pulmonologist would have begun me on the 3 antibiotics within one minute of meeting me….she had begun to write out prescriptions til I said ” wait…I am going to NJH ”
I must also add that when I compare the details of 3 different chest CAT scan reports ….10 years ago….1.5 years ago and then this past January . The one done at NJH contained 10x more info/interpretations as well as guidelines for future scanning!! The person reading the scan at NJH had by his name”Certified in thoracic reading” …maybe this is the difference? Regular radiologists vs further specializing in body areas.tdrell

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@tdrell, it’s rather unsettling that your ID doc wanted to begin you on the 3 antibiotics upon meeting you, and that you had experience with two other pulmonologists who didn’t agree on treatment. If one is asymptomatic, it makes it all the more difficult.

To further add to your comments about “Drs not agreeing re treating MAC”, that’s one reason I’d love to see a NATIONAL REGISTRY … where every state in the USA needed to report on each patient who contracted NTM, which species/type, symptoms, and treatment. The NTM conference had a speaker who collects and analyzes NTM data, which is so limited and based on Medicare claims. Yikes! Just imagine how much useful information each state registry could provide.

Re. NJH providing better details and interpretations of your CAT scans, I think that’s for several reasons: NTM is a disease they specialize in, but also that they knew what you were coming there for and what to look for. Perhaps 5 or 10 years ago, their details would not have been so ‘sharp’. Today, more scans are being given everywhere for other things and so the medical community is discovering more NTM. Yep, it is very important to have scans or x-rays read by a radiologist who is extremely familiar with that particular part of the body. Hope you are doing well these days.

Paula

REPLY
@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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Hello Jen, I know how you feel. Just hanging in there it will get better. whenever you feel frustrated and needs somebody to talk to, you can phone me. I will put my ph. number on your private message. We are all going through this situations scared and don’t know what to do. You are not wrong about getting the treatment instead of waiting to get worse but if nothing shows on your CT scan maybe you have MAC but not active or colonizing. Think positive and have faith, I know that is hard to do but try. To make you feel better I will tell you about myself. I have been on 3 meds for 12 months now and I saw Dr. 2 week ago and did a CT scan and show a new nodules on my lower right lung. I was upset and told my Dr. that means the meds are not working. I was fine 3 months ago before this. I don’t know what to do. Anyway, I will pray for you and try to think about something else besides our disease. God shower you with his Blessing. Always Cila.

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@pamelasc1

This is a question for Linda who wrote: “but had to stop from last Nov through Feb of this year when my MAC was so bad. Once I was on my meds for a couple of months and felt I could breathe again”. What were the meds you were on for those few months and when you wrote that your MAC was bad, what were your symptoms? It is good to know that one can control the MAC by taking meds for only two months, versus going back to the 18 month regimen of the Big Three meds… I just finished up with the 18 month regimen and so far so good. Pamela

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@josephene, I too been on meds for 12 months and saw my Dr. 3 weeks ago did CT scan shows that I have 2 new nodules on my lower right lung. I’m disappointed and I though I’m getting better instead getting worse. I told Dr. that seems like the meds are not working. He increase the dose of Azith and he said he will order a Inhaled Amikacin. Its been 3 weeks have not seen Amikacin yet. Cila

REPLY
@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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To all of you, You are loved and appreciated. Stay strong and carry on!
Becky

REPLY
@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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Hello Jen!
So glad you came back to us. After reading your post, I can see why you would feel over-whelmed. Sending you a ‘cyber hug’ right now. Sounds like you and I have similar situations with co-morbid diseases going on. Whenever I get multiple complications; I like to divide and conquer them, beginning with the most serious first. First and foremost, the weight needs to come down, that would take a lot of stress off of your heart and lungs. Plus, you may find that the weight loss will help you to feel better also. Since you are not fully colonized with the MAC, ask Dr Askamet about putting you on an alternating anti-biotic as a prophelactic treatment to prevent colonization. I did that for three years and it kept things in check. One month on cipro for ten days, then the next month on doxycycline for ten days. Did this for three yrs. I am thinking that can stave off full blown infection while you deal with weight and heart. (btw, it was a MAYO Dr that put my on the alternating antibiotics.) Set a realistic goal for your weight. Consider losing in increments, maybe post an image of someone a little smaller than yourself on the fridge. (that always worked for me when setting goals.) Don’t fret about losing a lot of weight to the point of being very thin; having fighting weight is a good thing, just not too much of it. My comments are just suggestions. Always run such suggestions past your physician before acting on them if you choose to try them. We all have diff circumstances with extra details, so always check with a dr.
I know how badly you feel. I too was sick every day for ten yrs.Went on disability in 2007. I used to not be able to walk to another room in my house without having to sit down and catch my breath. I walk several big blocks in my neighborhood, ride my bike four miles, and do aerobics (with oxygen) for one hr, three days a week. Yoga is another great thing to do to improve health, some yoga forms deal only with the breath, it may be called ‘PRANA YOGA’ not sure tho. I promise they don’t make you into a pretzel!
Question: are you coughing a lot? That may be an issue you will want to illiminate so that you feel good enough to take on your wellness journey. Jen, we are here for you. Please check in and let us know how you are doing. Big Hug – Terri M.

REPLY
@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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Hi Jen, me again. I left out something about myself. I went through pre-qualifying tests for a double lung transplant last Dec. I am trying my best not to need one; but that is how serious my lung issues are. Eating healthy, exercise, keeping your lungs clean like doing the inhaled saline twice a day, etc. When you find a great dr, follow their directions to a tee. I am currently operating on 1/3 of lung function, but I feel like a million bucks now. Ok, that million bucks is compared as to how I used to be. My current ‘million bucks’ could never run a marathon and gets hit with awful fatigue every afternoon. (and sometimes whole days of fatigue). Attitude is everything. Try to be positive that you will turn your health around to the point of living a natural lifespan. We cannot cure what we have, but we can slow it down considerably.

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@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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Thanks Becky! You too girlfriend!
 

Liked by chinasmom

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@pamelasc1

This is a question for Linda who wrote: “but had to stop from last Nov through Feb of this year when my MAC was so bad. Once I was on my meds for a couple of months and felt I could breathe again”. What were the meds you were on for those few months and when you wrote that your MAC was bad, what were your symptoms? It is good to know that one can control the MAC by taking meds for only two months, versus going back to the 18 month regimen of the Big Three meds… I just finished up with the 18 month regimen and so far so good. Pamela

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Cila, stay on them to get you the Amikacin.
 

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@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

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Hello, could the nodules be due to the type of bronchiecstasis you
have?
 

Liked by chinasmom

REPLY
@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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Cila, sometimes the nodules are due to the type of bronchiecstasis you
have. There are several types. It may not be due to the MAC and the drugs are
working. Just a thought.
 

Liked by chinasmom

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@tdrell

Jen Taylor and Paula….to add to the comments re Drs not agreeing re treating MAC ….I have had sort of same experience with Drs disagreeing….I had to find a new Pulmonologist locally….he refused to agree wth NJH ‘s decision not to treat me with antibiotics . The new one agrees with NJH. I am still amazed that the ID Dr that I was sent to by former pulmonologist would have begun me on the 3 antibiotics within one minute of meeting me….she had begun to write out prescriptions til I said ” wait…I am going to NJH ”
I must also add that when I compare the details of 3 different chest CAT scan reports ….10 years ago….1.5 years ago and then this past January . The one done at NJH contained 10x more info/interpretations as well as guidelines for future scanning!! The person reading the scan at NJH had by his name”Certified in thoracic reading” …maybe this is the difference? Regular radiologists vs further specializing in body areas.tdrell

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I would also like to add that many 'local' doctor's offices use antiquated
equipment. When I presented my films to the Mayo Dr, he laughed at them. Said I
needed all new because my local doc was using equipment from the Flintstones and
he could not get an accurate reading on them. He showed me the ones I had
brought in beside the new and there was a big difference in the image!
 

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