(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

@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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Another thing, that is the reason I go to the Mayo, they use cutting edge
equipment.
 

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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Absolutely!
 

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@jennifernicole

Many of the people posting on here seem to know more that some of the doctors I have encountered. Can anyone share what evidence of MAC/MAI on a cat scan includes? Is it nodules, ground glasz opacities, tree in bud (all things on my report but not sure if that is consistant). I was diagnosed witj MAI through lavage washings but i don’t know if it is the reason I am having issues or whether whatever issues i have been having made me vulnerable to the MAI …

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Jen, those descriptive words you used to describe your scan sounds more like bronchiecstasis than MAC. Do you know if you have that also? The two usually go hand -in-hand. I was told at the conference in D.C., that to get a truly accurate account on whether you are truly infected with MAC is to have THREE sputem samples taken in the mornings of three consecutive days, from a deep cough.. Refridergerate them until you can get them to the lab, and tell the lab all three are only an hour old; or else they won’t take them. Even our best Gold Standard institutions don’t do this, but that may be changing in the future. You can also request that it be done that way. Everyone has MAC in their lungs, the thing is to find out if they are colonizing.

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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@ginak I hope you can avoid it for awhile. Thankfully so far my Barrett’s has not been terribly advanced so all I do for it is take omeprazole (prilosec). The more I read about taking those drugs the more I worry though because they say they can lead to Alzheimer’s. I am looking forward to my endoscopy to see what state my esophagus is in now. I am hoping it has somehow improved.
JK

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, we are all here for you, and we really DO care! – Hugs 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, yes….me again. I replied to one of your posts earlier this evening. I am hoping it did not come off as trite. After reading this post to Katherine; I have a better understanding of how much you are dealing with. Did not know you were battling diabetes too on top of everything else. Or that you were hospitalized recently with respiratory failure. Good God woman, who could fault you for feeling so desperate? Dealing with chronic illness is tough. I am sure you are tired of feeling sick and tired. I sure hope you get answers soon to what is going on with your lungs. My heart and prayers go out to you. – Terri M.

REPLY
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Good luck with your endoscopy!
 

Liked by chinasmom

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@ginak

Hi @jentaylor I’m sure no one here thinks you’re asking for pity! We’re all on this same road, just at different points. I always say, “A burden shared, is a burden lightened.” (I’m not sure if I made that quote up or I read it somewhere and it stuck with me! Lol) But in any case, I believe the more people we share our burdens with the more people we have offering prayers for us. I hope and pray you find answers soon and can receive the treatment that helps you.

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Jen, I am pretty sure collective prayers have kept me alive over the years.
Believe me, many of us on here never underestimate their power. We will add you
to our list.  -Terri M.
 

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@ginak

Hi @jentaylor I’m sure no one here thinks you’re asking for pity! We’re all on this same road, just at different points. I always say, “A burden shared, is a burden lightened.” (I’m not sure if I made that quote up or I read it somewhere and it stuck with me! Lol) But in any case, I believe the more people we share our burdens with the more people we have offering prayers for us. I hope and pray you find answers soon and can receive the treatment that helps you.

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Gina, you are absolutely right. Having support from this group and the lung
transplant group at the Mayo has eased my fear considerably.
 
 

REPLY
@jennifernicole

Many of the people posting on here seem to know more that some of the doctors I have encountered. Can anyone share what evidence of MAC/MAI on a cat scan includes? Is it nodules, ground glasz opacities, tree in bud (all things on my report but not sure if that is consistant). I was diagnosed witj MAI through lavage washings but i don’t know if it is the reason I am having issues or whether whatever issues i have been having made me vulnerable to the MAI …

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Paula, i agree. The CT scan gives the doctor a base. I, too, had a large nodule on my lungs and was diagnosed with MAC after a sputum culture and put on the 3 big antibiotics. My doctor wanted another CT scan 2 months later, before she did a biopsy to see if it was cancer, which she didnt think it was. The second CT scan showed the size of the nodule had shrunk by 2/3. What a difference. She showed it to my husband and I and it was unbelievable. The meds are working and I’m now back to going to the gym and singing in the choir at church. Amazing that i have more air in my lungs than I’ve had in a long while. For the first month, it was bad with the nausea and i almost gave up, but my advice to anyone is “dont quit”. It gets better. I was also diagnosed with bronchiectisis 23 years ago. Thats under control with nebulizer treatments twice daily. I’m 75 years old, but i can honestly say I can keep up with anyone 25 years younger. Never give in. Ever.!!! Kathi ( 2-10-42)

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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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Josephine, ask your dr for more details. What is showing up on your
radiology image may be bronchiecstasis or scarring that is not likely to
change. Regular sputem tests should prove if the MAC is under control.
 

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@jennifernicole

Many of the people posting on here seem to know more that some of the doctors I have encountered. Can anyone share what evidence of MAC/MAI on a cat scan includes? Is it nodules, ground glasz opacities, tree in bud (all things on my report but not sure if that is consistant). I was diagnosed witj MAI through lavage washings but i don’t know if it is the reason I am having issues or whether whatever issues i have been having made me vulnerable to the MAI …

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I have been diagnosed with bronchiectasis recently during this 10 month period of multiple pneumonias. The MAC/MAI was diagnosed after a bronchoscopy with lavage. Hard to tell of my symptoms are from active MAI or something else. I start the third antibiotic today (rimpafin?) and keeping my fingers crossed!

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@jennifernicole

Many of the people posting on here seem to know more that some of the doctors I have encountered. Can anyone share what evidence of MAC/MAI on a cat scan includes? Is it nodules, ground glasz opacities, tree in bud (all things on my report but not sure if that is consistant). I was diagnosed witj MAI through lavage washings but i don’t know if it is the reason I am having issues or whether whatever issues i have been having made me vulnerable to the MAI …

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@21042, Oh my, I love your attitude!!! And I think a good attitude is essential when dealing with any chronic illness.
Boy, I sure am jealous that at 75 yrs old, you can keep up with anyone 25 years younger. Bravo to you!
Re. the meds, I too was so very nauseated when beginning the drugs, or when I had to change where I got my drugs from (different manufacturing plants perhaps?) And the lethargy and fatigue is awful. Yep, “don’t quit”, it does get better. Best wishes!

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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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NJH said I do not have bronchiecstasis….the main reason for my 2 year duration cough and MAC grown from culture on bronchoscope ( locally) was from silent aspiration while awake and asleep from my Gerd.
In SE Wisconsin we have NTM in city water pipes….soil…aerosolized.
My first culture upon arrival at NJH grew NTM on the first of 3 phases….Not in 2nd or 3rd phase…..
Cultures from day two and 3 that I produced…..grew NONE even after several months.
My view is that on the first day I still had NTM in my stomach (from drinking it in Wisconsin….which then got aspirated into my lungs and on first culture done at NJH….a few could still show up on initial culture .
I now drink bottled spring water and am trying to loose weight ( another recommendation) and other measjures for the Gerd.
As previously stated….they gave me a methocholine test…the gold standard to check for asthma…which after 30 years of treatment I don’t have….but I have chronic allergic rhinitis ( hence lots of dripping mucus from it…I see allergist at home….
They did a sleep study ( local bronchoscope showed obstructive condition which I do not have obvious symptoms of) which showed I need CPAP since I had 47 apneic events an hour. So since April I use the CPAP machine nightly.
So….long answer….I am doing “ok” and thankful I have Medicare and great supplement.
Also agree re need for update diagnostic machines….Cat scans done at medical center….brand new 200 bed hospital part of Aurora systemwisconsin
Biggest provider and then 3rd at NJH.
Tdrell

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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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@jentaylor What you’re experiencing is not just normal, but necessary for your healing process; the 5 stages of grief – denial, anger, bargaining, depression and acceptance. We all grieve the loss of our health when sickness of any kind let alone multiple issues first hit(s): mine is RA and MAC/Bronchiectasis; others have their multiples, and those who give themselves permission to experience the stages of grief get better faster. You appear to presently be in stage II, anger. Good! Be angry! Being as unwell as you are feels sucky! But know that as you advance through the stages, you’ll get a better grasp on what to do and how to do it. Then you’ll really be on your way to better health.

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