(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

@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

Terri, any way you would want to move from that area? You will have to be
careful not to re-infect yourself there. Learned from that seminar that many
people who come down with NTM infection again is due to catching it in the same
places they caught it before. Did you see my post about hot water heaters being
a major source of MAC bacteria? Did learn also that the MAC tends to be worse in
certain regions.
 

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!

Jump to this post

Boomer is right Jen. I went through all of those stages. Now, I just
advocate for myself and others, give myself permission to rest when my body
demands it, accept that things are the way they are and not lament for what I
longer have. It still sucks, I know. I still enjoy life, that is the main thing
for me.
 

REPLY
@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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Hi Terri. I am so glad that you do not have bronchiecstasis. That is one big blessing to be grateful for right there.

Liked by tdrell, chinasmom

REPLY
@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 found an excellent site on Pulmonary nodules by going to “My.clevelandclinic.org” site and putting Pulmonary nodules” by the search icon tdrell

REPLY
@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

Thank you Terri, I will check it out.
 

REPLY
@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

Wind walker….no thoughts of moving from here….I predict that at some time in the future…NTM. Will be found in every state…..none the less I take precautions such as not drinking from water or ice made by refrigerators….drinking spring water….leaving door open when showering not inhaling steam….no longer going to YMCA to use their warm pool or hot tube….water heater set at 120..I will get a repeat CAT scan and 3 separate NTM cultures done by NJH….a year from the ones done in 2017.tdrell

REPLY
@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

Terri, all sounds good! I gave up on all public pools and hot tubs of any
kind. Not just because of MAC, but because I get bad reactions from chlorine,
always have. Learned at the conference that chlorine actually concentrates the
MAC.
 

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!

Jump to this post

Hi Cila, thank you for your supportive words & thanks for sharing your story. You must be feeling so many different feelings right now! I can only imagine what it must feel like to go through 12 months of such difficult treatment only then to find new nodules! Please let me know what comes from this. You are in my prayers. Much love, Jen

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!

Jump to this post

Hi Terri, WOW!!! I am amazed by your positive attitude & outlook despite your not so great physical conditions & limitations. That’s very inspiring to hear of all of your efforts to take such diligent care of your lungs in so many different way. It also feels sooo good ti hear someone understands & has been in the same place of feeekung sick everyday for 10 years!!!! I try never to complain about how badly I might be feeling in any given day but it sure feels good to be able to express that to others who can honestly relate! I know each of our stories differ but we all have difficulties but we have common threads that help us to understand what another is saying or feeling. That feels “good” to not be so alone with this. Thanks for sharing! Much love, Jen

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!

Jump to this post

Hi @heathert, thank you for your words of support. I actually decided just today to start meditation as a daily practice. I have been trying it maybe 1-2 days per week & it does seem to really help calm my body & mind. There are many ones to listen to on you tube & different apps. It’s actually hard to decide on one to listen to. I find if I do it on my own in silence or with just music, my mind drifts too much. Thanks for the good suggestion. Funny that it was on my mind the same day you played this! Great minds think alike, as they always say! Much love, Jen

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!

Jump to this post

Hi Tdrell, thank you for you sparkling of light & words of support & understanding! I really, really appreciate that I am in a place, at Connect, where people just don’t say words of support but rather, speak words of true understanding. That means so much to me. It’s so genuine. The caring in people’s words comes shining through. I do feel comfortable here & feel like I can share how I truly feel & not have to sensor it so that others don’t feel awkward becauce they don’t know what to say in response. Thank you for welcoming me here. Much love, Jen

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!

Jump to this post

Hi Jen, yeah, we are in this together. I am having a tough night breathing
because yesterday & today was especially hot & humid. Made two
mistakes. First one was going to an outdoor art festival yesterday and
walking around in that heat. Second one was eating four slices of bread in one
day. I am gluten sensitive, my lungs gum up whenever I eat very much
gluten. I know better to do either of those things, it's just that I have been
feeling so good lately that I thought I could get away it. I will be back
to my 'normal' hopefully by tomorrow. I am actually looking forward to
sleeping with my oxygen tonight. I hope you are feeling somewhat better,
emotionally at least for now; until you can get a grip on your body. Am holding
you and Katherine in my thoughts and prayers.  Hugs – Terri M.
 

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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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Hi @heathert, I also wanted to say I appreciate your words of hope that I have made it this far & with a positive attitude, the sky’s the limit for however long I may live! I need to keep reminding myself about that! Much love, Jen

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 Katherine (& all), I am SO grateful that you, & all of you on Connect, are here with so many wonderful words of support, kindness, & wisdom! You all are just amazing! I feel so less alone after reading through the many dear words that you all have written in responses/replies. It feels so good just to be able to speak from my heart about my experience & my feelings. Most everyone in my encounters & even my own family, are so uncomfortable (& maybe afraid) to hear about how I am doing or listen to me about I am feeling. It’s a subject too heavy to so many & they shy away from what they don’t know or can’t understand or what they just don’t want to hear….so I guess (I don’t truthfully know). It isolates me & makes me want to therefore withdrawl which only makes a crummy situation worse. Here I can speak truthfully.

You all seem so genuine & such dear, sweet people. I feel blessed to have been guided in this direction, towards you all. It Seems like & feels like I stumbled upon finding you, Connect but sometimes what we think what has “just happened” was really what was suppose to happen! Life seems to guide you certain ways, at certain times & blesses you with something that’s just what you needed at that point in time in your life! I honestly have NO experience with reading much less contributing to such a thing as this, like a blog of sorts. It feels like “home” though in an odd but soothing way… it’s a little hard to put to words, the way I am feeling, although, I think you all get what I’m saying or at least I hope!

Again, I thank you ALL so very much for being so welcoming & encouraging. I will do my very best to not withdrawl but rather express my feelings when I’m feeling scared, “stuck” or alone. God has placed you all in my life for a reason. For this I am grateful!

I also must ask for people’s help, to please help hold me accountable for daily self-care…this is a weakness of mine…I try to take care of mysel but than when I don’t feel any better or get sicker anyway, I get angry & feel like all of what I have done, has been useless & I get sick/new infection regardless. Also because I’m just plain tired & feel like crap, so tired that I don’t feel I have an ounce of energy to put forth the effort to do what I need to do to take care of myself…so this is a BIG, HUGE, challenge for me! I need to make a commitment to make changes, positive & healthy changes, in my life…from mind, body & soul…to be diligent on pulmonary toileting/care EVERYDAY (morning, afternoon, evening & bedtime) & exercise for lung health & overall health (weight, diabetes, heart)…for wearing the oxygen when I need it & to not let what others think stand in my way of taking the best possible care of myself…for eating healthy & clean…for nurturing my mind with yoga &/or meditation which are new to me…it’s a full-time job taking care of yourself (while caring for others, too!)!!!!! Also nurturing important relationships in my life. You are so right, Katherine, “at 3am, it’s just you & me babe!” I love that expression!!! I do have great people in my life for which I feel blessed. And I am blessed that I have all of YOU at Connect to go through life with through all of the twists & turns that life takes you through. You all understand & to be truly understood by others, is worth more than a million bucks!!!!!!! Thank you, everybody! Much love, Jen

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!

Jump to this post

@jentaylor great minds alright! So glad to hear it is helping you.I first saw it on Dr Oz show, and thai chi also, both help alot. Hope you are having a good day and the sun is shining

REPLY
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