Just got diagnosed with MAI and bronchietasis last August 2021. Will see the infectious Disease Doctor Monday January 31. I am so scared and have terrible anxiety . I am 71 years old. I was told as you get older it gets so much worse . I am going to Cedars-Sinai in Los Angeles. What can I do to relieve some of this anxiety?
Just got diagnosed with MAI and bronchietasis last August 2021. Will see the infectious Disease Doctor Monday January 31. I am so scared and have terrible anxiety . I am 71 years old. I was told as you get older it gets so much worse . I am going to Cedars-Sinai in Los Angeles. What can I do to relieve some of this anxiety?
Hi i was full anxiety when i was told the horrible side effects of the treatment for mac but reading this blog it gave me hope that i could manage. They have good info and reading the experiences of others helps a lot. I will be starting in February the 3 meds and hopefully will do well.
Will update as i go. Having the bronchiectasis makes it harder to eliminate and it may come back. I can’t think that far i am just dealing with now and hoping the infection can be killed. Depending on your situation they may not treat right now. Your infectious disease doctor will let you know. I asked lots of questions and researched this infection to death. It helped to have a little knowledge before seeing the doctor. Wishing you the best. Miriam
Hi i was full anxiety when i was told the horrible side effects of the treatment for mac but reading this blog it gave me hope that i could manage. They have good info and reading the experiences of others helps a lot. I will be starting in February the 3 meds and hopefully will do well.
Will update as i go. Having the bronchiectasis makes it harder to eliminate and it may come back. I can’t think that far i am just dealing with now and hoping the infection can be killed. Depending on your situation they may not treat right now. Your infectious disease doctor will let you know. I asked lots of questions and researched this infection to death. It helped to have a little knowledge before seeing the doctor. Wishing you the best. Miriam
Thanks I have been researching and living on the computer since I was diagnosed. Not much coughing but I know I have the nodular and no cavities or tissue damage yet. So hopeful for the best outcome . I will be following you to see how you manage your treatment. I hope the very best for you. I didn’t even know this disease or infection was possible. Caught me totally off guard.Never was really sick a day in my life prior to this.I will pray for you during this journey.
Thanks I have been researching and living on the computer since I was diagnosed. Not much coughing but I know I have the nodular and no cavities or tissue damage yet. So hopeful for the best outcome . I will be following you to see how you manage your treatment. I hope the very best for you. I didn’t even know this disease or infection was possible. Caught me totally off guard.Never was really sick a day in my life prior to this.I will pray for you during this journey.
Hi, I understand exactly! I thought I was having a bad asthma attack, brought on by bronchitis, when I learned that I had bronchiectasis, MAC and a pseudomonas infection - it sent me reeling!
Here is what I learned for myself:
Almost nobody has heard of these conditions until they are diagnosed with them.
Everyone is different, both in their infection and their response to treatment.
Everything you read seems Scary with a capital 'S' at first.
There are a lot of different treatments used, and you will always wonder if your doctor has chosen the best one.
Your first inclination is to do everything that everyone recommends to get rid of "it" and make it stay away.
At first treatment feels like it is taking over your life.
The most important thing I have learned after 4 years, 3 doctors, and many hours of study is:
Bronchiectasis and the opportunistic infections that come with it are things I have learned to live with, not live for. Based on my own health and risk tolerance, I choose to implement the most important treatments and mitigation strategies and let the rest go. By that I mean, I have figured out which things are the most important to keep me healthy & concentrate on those. I call it the 80/20 rule. If I can get 80% of the benefit from 20% of the treatments and strategies, and that keeps me healthy, it's good enough for me.
My effort is concentrated on:
AIRWAY CLEARANCE - keeping mucus thin with Mucinex, N acetyl Cysteine, and lots of water. Using 7% saline daily, adding asthma meds as needed, and coughing.
STAYING HEALTHY - immunizations, diet, sleep, exercise, keeping my equipment clean, keep the water heaters at 138F to minimize bacteria growth
AVOIDING BIG RISKS - sick people, hot tubs, smokers, the soil around my home (probable source of my strain of MAC)
RESPONDING TO HEALTH CHANGES - increase nebs and add asthma meds as soon as any changes occur, rest as needed
So far, after 2 plus years off the Big 3, and faithfully following this routine, I have had one minor exacerbation treated with increased nebs and a course of steroids. My asthma and bronchiectasis are both diagnosed as "moderate" and I have a few other health issues that typically come with 7 decades on earth. My CT looks the same as the day I quit the antibiotics. My sputum remains clear and loose. I have some shortness of breath, and my six year old grandson now wins our footraces, but I think overall I am doing pretty well. If that changes, I may have to "up my game" and do more.
Here is a list of the things I don't worry about (caveat - I don't have GERD, so issue surrounding drinking water are not so important to me) - I don't boil my water, avoid showers or swimming pools, clean my shower head, worry about drinking water in restaurants...
My recommendation to fellow "bronchs" is:
Pick one or two up-to-date, knowledgeable resources and ignore the rest. I have chosen National Jewish Health (NJH) and Mayo as mine sources, your choices may differ. Ignore miracle treatments or cures - as of today, there are none.
If you need to start antibiotics, you will find a lot of help managing the side effects on these two sites - most people who must be treated find a way to deal with the meds.
Find a doctor experienced in treating your condition, or if that is not an option, one who is willing to work with you and consult with the experts in up-to-date treatment strategies. (my docs call NJH if they are unsure about "next steps" in my care.)
Find the level of effort that keeps you healthy and pursue it, forget the rest until you need it.
Finally, take a deep breath, and tell yourself "this is something I will live with, not live for."
Have you and your doctors settled on a course of action yet?
Sue
I am posting this to all bloggers in the MAC and Bronchiectasis group , I just read Sue,Volunteer Mentor and Miriams' post.
I am brand new to this blog. I was treated with the three MAC medications in 2019 for 15 months. I used a good probiotic, tried to maintain a good variety of foods and nutrition to maintain my weight and overall health. Appetite was also a problem for me. Fatigue was also an issue . The first months I took a leave of absence, the next few months I went back to work 1/2 time and then full time, and then remote work for 9 months due to covid.
It is now 2022 and the MAC is back and I am facing the strong possibility of needing to go back on the MAC meds at some point. I am started on a Hill Rom Vest and will soon start some hypertonic solution nebulizer and an inhaler, getting a sleep study done and possible upper GI to see if pain and burning in lung area discomfort is also GERD. I still have a few years to work so I am trying to stay healthy enough to work full time. Weaning myself off of Advil and switched to tylenol. Trying some prilosec for the possible GERD. I am so glad I found this group as I totally understand what people with MAC and bronchiectasis are going through. . . It's a tough road some days but there is hope. Making small changes and getting advice and support from each other is so helpful. I am excited to view more blogs and learn how to use this platform. . Thank you everyone! mtyler
Hi, I understand exactly! I thought I was having a bad asthma attack, brought on by bronchitis, when I learned that I had bronchiectasis, MAC and a pseudomonas infection - it sent me reeling!
Here is what I learned for myself:
Almost nobody has heard of these conditions until they are diagnosed with them.
Everyone is different, both in their infection and their response to treatment.
Everything you read seems Scary with a capital 'S' at first.
There are a lot of different treatments used, and you will always wonder if your doctor has chosen the best one.
Your first inclination is to do everything that everyone recommends to get rid of "it" and make it stay away.
At first treatment feels like it is taking over your life.
The most important thing I have learned after 4 years, 3 doctors, and many hours of study is:
Bronchiectasis and the opportunistic infections that come with it are things I have learned to live with, not live for. Based on my own health and risk tolerance, I choose to implement the most important treatments and mitigation strategies and let the rest go. By that I mean, I have figured out which things are the most important to keep me healthy & concentrate on those. I call it the 80/20 rule. If I can get 80% of the benefit from 20% of the treatments and strategies, and that keeps me healthy, it's good enough for me.
My effort is concentrated on:
AIRWAY CLEARANCE - keeping mucus thin with Mucinex, N acetyl Cysteine, and lots of water. Using 7% saline daily, adding asthma meds as needed, and coughing.
STAYING HEALTHY - immunizations, diet, sleep, exercise, keeping my equipment clean, keep the water heaters at 138F to minimize bacteria growth
AVOIDING BIG RISKS - sick people, hot tubs, smokers, the soil around my home (probable source of my strain of MAC)
RESPONDING TO HEALTH CHANGES - increase nebs and add asthma meds as soon as any changes occur, rest as needed
So far, after 2 plus years off the Big 3, and faithfully following this routine, I have had one minor exacerbation treated with increased nebs and a course of steroids. My asthma and bronchiectasis are both diagnosed as "moderate" and I have a few other health issues that typically come with 7 decades on earth. My CT looks the same as the day I quit the antibiotics. My sputum remains clear and loose. I have some shortness of breath, and my six year old grandson now wins our footraces, but I think overall I am doing pretty well. If that changes, I may have to "up my game" and do more.
Here is a list of the things I don't worry about (caveat - I don't have GERD, so issue surrounding drinking water are not so important to me) - I don't boil my water, avoid showers or swimming pools, clean my shower head, worry about drinking water in restaurants...
My recommendation to fellow "bronchs" is:
Pick one or two up-to-date, knowledgeable resources and ignore the rest. I have chosen National Jewish Health (NJH) and Mayo as mine sources, your choices may differ. Ignore miracle treatments or cures - as of today, there are none.
If you need to start antibiotics, you will find a lot of help managing the side effects on these two sites - most people who must be treated find a way to deal with the meds.
Find a doctor experienced in treating your condition, or if that is not an option, one who is willing to work with you and consult with the experts in up-to-date treatment strategies. (my docs call NJH if they are unsure about "next steps" in my care.)
Find the level of effort that keeps you healthy and pursue it, forget the rest until you need it.
Finally, take a deep breath, and tell yourself "this is something I will live with, not live for."
Have you and your doctors settled on a course of action yet?
Sue
Hi Sue. I will be seeing the infectious disease doctor on Monday so will find out about treatment. My pulmonary doctor said that if it were her she would start treatment. I am having my Hill-rom vest delivered Tuesday. I have not been feeling well for the past week. Have that feeling of pneumonia in my chest. Could you explain what an flair up feels like. Just wondering if that is what’s going on with me. Also I have really dry cotton mouth and I am constantly drinking water that I boil. Have you had that problem? We put a water filtration and bacteria on our house water system. I have a hot tub however I have not been in it in the last 5 years. Probably have only used it 10 times in 15 years. Doctor said I probably got it years ago whenI used it. I have always enjoyed my hot showers too. Do we ever really know how we got this? Husband says we will never know so stop trying.
Hi Sue. I will be seeing the infectious disease doctor on Monday so will find out about treatment. My pulmonary doctor said that if it were her she would start treatment. I am having my Hill-rom vest delivered Tuesday. I have not been feeling well for the past week. Have that feeling of pneumonia in my chest. Could you explain what an flair up feels like. Just wondering if that is what’s going on with me. Also I have really dry cotton mouth and I am constantly drinking water that I boil. Have you had that problem? We put a water filtration and bacteria on our house water system. I have a hot tub however I have not been in it in the last 5 years. Probably have only used it 10 times in 15 years. Doctor said I probably got it years ago whenI used it. I have always enjoyed my hot showers too. Do we ever really know how we got this? Husband says we will never know so stop trying.
Started a response earlier and lost it. Have you tried other airway clearance and failed?
Exacerbation - asthma attacks and worse cough, then thicker or colored sputum, shortness of breath, tight or painful chest, low energy, bad fatigue, and fever.
As soon as it starts I add levalbuterol neb to 7%saline and increase to 2-4x a day. If it progresses to tight chest, call doc and start steroids. If it gets to fever, call doc for a course of antibiotics. Never got beyond, so I don't know what would be next.
May I ask why you are going to use the vest? Have you tried more conservative airway clearance methods?
Sue
Started a response earlier and lost it. Have you tried other airway clearance and failed?
Exacerbation - asthma attacks and worse cough, then thicker or colored sputum, shortness of breath, tight or painful chest, low energy, bad fatigue, and fever.
As soon as it starts I add levalbuterol neb to 7%saline and increase to 2-4x a day. If it progresses to tight chest, call doc and start steroids. If it gets to fever, call doc for a course of antibiotics. Never got beyond, so I don't know what would be next.
May I ask why you are going to use the vest? Have you tried more conservative airway clearance methods?
Sue
I have tried a percussion massager on my chest and back morning and evening. I have tried the AirPhysio and the Doctor has given me an inhaler to try and bring up mucus. I do the huff coughing but I have not been able to bring up any mucus what so ever. I thought maybe I should try the best since it was totally covered by insurance.
I have tried a percussion massager on my chest and back morning and evening. I have tried the AirPhysio and the Doctor has given me an inhaler to try and bring up mucus. I do the huff coughing but I have not been able to bring up any mucus what so ever. I thought maybe I should try the best since it was totally covered by insurance.
Hi, I understand exactly! I thought I was having a bad asthma attack, brought on by bronchitis, when I learned that I had bronchiectasis, MAC and a pseudomonas infection - it sent me reeling!
Here is what I learned for myself:
Almost nobody has heard of these conditions until they are diagnosed with them.
Everyone is different, both in their infection and their response to treatment.
Everything you read seems Scary with a capital 'S' at first.
There are a lot of different treatments used, and you will always wonder if your doctor has chosen the best one.
Your first inclination is to do everything that everyone recommends to get rid of "it" and make it stay away.
At first treatment feels like it is taking over your life.
The most important thing I have learned after 4 years, 3 doctors, and many hours of study is:
Bronchiectasis and the opportunistic infections that come with it are things I have learned to live with, not live for. Based on my own health and risk tolerance, I choose to implement the most important treatments and mitigation strategies and let the rest go. By that I mean, I have figured out which things are the most important to keep me healthy & concentrate on those. I call it the 80/20 rule. If I can get 80% of the benefit from 20% of the treatments and strategies, and that keeps me healthy, it's good enough for me.
My effort is concentrated on:
AIRWAY CLEARANCE - keeping mucus thin with Mucinex, N acetyl Cysteine, and lots of water. Using 7% saline daily, adding asthma meds as needed, and coughing.
STAYING HEALTHY - immunizations, diet, sleep, exercise, keeping my equipment clean, keep the water heaters at 138F to minimize bacteria growth
AVOIDING BIG RISKS - sick people, hot tubs, smokers, the soil around my home (probable source of my strain of MAC)
RESPONDING TO HEALTH CHANGES - increase nebs and add asthma meds as soon as any changes occur, rest as needed
So far, after 2 plus years off the Big 3, and faithfully following this routine, I have had one minor exacerbation treated with increased nebs and a course of steroids. My asthma and bronchiectasis are both diagnosed as "moderate" and I have a few other health issues that typically come with 7 decades on earth. My CT looks the same as the day I quit the antibiotics. My sputum remains clear and loose. I have some shortness of breath, and my six year old grandson now wins our footraces, but I think overall I am doing pretty well. If that changes, I may have to "up my game" and do more.
Here is a list of the things I don't worry about (caveat - I don't have GERD, so issue surrounding drinking water are not so important to me) - I don't boil my water, avoid showers or swimming pools, clean my shower head, worry about drinking water in restaurants...
My recommendation to fellow "bronchs" is:
Pick one or two up-to-date, knowledgeable resources and ignore the rest. I have chosen National Jewish Health (NJH) and Mayo as mine sources, your choices may differ. Ignore miracle treatments or cures - as of today, there are none.
If you need to start antibiotics, you will find a lot of help managing the side effects on these two sites - most people who must be treated find a way to deal with the meds.
Find a doctor experienced in treating your condition, or if that is not an option, one who is willing to work with you and consult with the experts in up-to-date treatment strategies. (my docs call NJH if they are unsure about "next steps" in my care.)
Find the level of effort that keeps you healthy and pursue it, forget the rest until you need it.
Finally, take a deep breath, and tell yourself "this is something I will live with, not live for."
Have you and your doctors settled on a course of action yet?
Sue
I was recently diagnosed with MAC. I started the big 3 and had a bad reaction. I am off meds and now under observation until March—will be referrred to IFD dr. If disease has progressed. I am asymptomatic except for tiring easily. Is it better to wait until I have more symptoms? Will disease continue to progress at a slow rate? Thinking I will go to Duke or Chapel Hill MAC specialist for second opinion. This is overwhelming!
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Just got diagnosed with MAI and bronchietasis last August 2021. Will see the infectious Disease Doctor Monday January 31. I am so scared and have terrible anxiety . I am 71 years old. I was told as you get older it gets so much worse . I am going to Cedars-Sinai in Los Angeles. What can I do to relieve some of this anxiety?
Hi i was full anxiety when i was told the horrible side effects of the treatment for mac but reading this blog it gave me hope that i could manage. They have good info and reading the experiences of others helps a lot. I will be starting in February the 3 meds and hopefully will do well.
Will update as i go. Having the bronchiectasis makes it harder to eliminate and it may come back. I can’t think that far i am just dealing with now and hoping the infection can be killed. Depending on your situation they may not treat right now. Your infectious disease doctor will let you know. I asked lots of questions and researched this infection to death. It helped to have a little knowledge before seeing the doctor. Wishing you the best. Miriam
-
Like -
Helpful -
Hug
1 ReactionThanks I have been researching and living on the computer since I was diagnosed. Not much coughing but I know I have the nodular and no cavities or tissue damage yet. So hopeful for the best outcome . I will be following you to see how you manage your treatment. I hope the very best for you. I didn’t even know this disease or infection was possible. Caught me totally off guard.Never was really sick a day in my life prior to this.I will pray for you during this journey.
-
Like -
Helpful -
Hug
1 ReactionHi, I understand exactly! I thought I was having a bad asthma attack, brought on by bronchitis, when I learned that I had bronchiectasis, MAC and a pseudomonas infection - it sent me reeling!
Here is what I learned for myself:
Almost nobody has heard of these conditions until they are diagnosed with them.
Everyone is different, both in their infection and their response to treatment.
Everything you read seems Scary with a capital 'S' at first.
There are a lot of different treatments used, and you will always wonder if your doctor has chosen the best one.
Your first inclination is to do everything that everyone recommends to get rid of "it" and make it stay away.
At first treatment feels like it is taking over your life.
The most important thing I have learned after 4 years, 3 doctors, and many hours of study is:
Bronchiectasis and the opportunistic infections that come with it are things I have learned to live with, not live for. Based on my own health and risk tolerance, I choose to implement the most important treatments and mitigation strategies and let the rest go. By that I mean, I have figured out which things are the most important to keep me healthy & concentrate on those. I call it the 80/20 rule. If I can get 80% of the benefit from 20% of the treatments and strategies, and that keeps me healthy, it's good enough for me.
My effort is concentrated on:
AIRWAY CLEARANCE - keeping mucus thin with Mucinex, N acetyl Cysteine, and lots of water. Using 7% saline daily, adding asthma meds as needed, and coughing.
STAYING HEALTHY - immunizations, diet, sleep, exercise, keeping my equipment clean, keep the water heaters at 138F to minimize bacteria growth
AVOIDING BIG RISKS - sick people, hot tubs, smokers, the soil around my home (probable source of my strain of MAC)
RESPONDING TO HEALTH CHANGES - increase nebs and add asthma meds as soon as any changes occur, rest as needed
So far, after 2 plus years off the Big 3, and faithfully following this routine, I have had one minor exacerbation treated with increased nebs and a course of steroids. My asthma and bronchiectasis are both diagnosed as "moderate" and I have a few other health issues that typically come with 7 decades on earth. My CT looks the same as the day I quit the antibiotics. My sputum remains clear and loose. I have some shortness of breath, and my six year old grandson now wins our footraces, but I think overall I am doing pretty well. If that changes, I may have to "up my game" and do more.
Here is a list of the things I don't worry about (caveat - I don't have GERD, so issue surrounding drinking water are not so important to me) - I don't boil my water, avoid showers or swimming pools, clean my shower head, worry about drinking water in restaurants...
My recommendation to fellow "bronchs" is:
Pick one or two up-to-date, knowledgeable resources and ignore the rest. I have chosen National Jewish Health (NJH) and Mayo as mine sources, your choices may differ. Ignore miracle treatments or cures - as of today, there are none.
If you need to start antibiotics, you will find a lot of help managing the side effects on these two sites - most people who must be treated find a way to deal with the meds.
Find a doctor experienced in treating your condition, or if that is not an option, one who is willing to work with you and consult with the experts in up-to-date treatment strategies. (my docs call NJH if they are unsure about "next steps" in my care.)
Find the level of effort that keeps you healthy and pursue it, forget the rest until you need it.
Finally, take a deep breath, and tell yourself "this is something I will live with, not live for."
Have you and your doctors settled on a course of action yet?
Sue
-
Like -
Helpful -
Hug
5 ReactionsI am posting this to all bloggers in the MAC and Bronchiectasis group , I just read Sue,Volunteer Mentor and Miriams' post.
I am brand new to this blog. I was treated with the three MAC medications in 2019 for 15 months. I used a good probiotic, tried to maintain a good variety of foods and nutrition to maintain my weight and overall health. Appetite was also a problem for me. Fatigue was also an issue . The first months I took a leave of absence, the next few months I went back to work 1/2 time and then full time, and then remote work for 9 months due to covid.
It is now 2022 and the MAC is back and I am facing the strong possibility of needing to go back on the MAC meds at some point. I am started on a Hill Rom Vest and will soon start some hypertonic solution nebulizer and an inhaler, getting a sleep study done and possible upper GI to see if pain and burning in lung area discomfort is also GERD. I still have a few years to work so I am trying to stay healthy enough to work full time. Weaning myself off of Advil and switched to tylenol. Trying some prilosec for the possible GERD. I am so glad I found this group as I totally understand what people with MAC and bronchiectasis are going through. . . It's a tough road some days but there is hope. Making small changes and getting advice and support from each other is so helpful. I am excited to view more blogs and learn how to use this platform. . Thank you everyone! mtyler
-
Like -
Helpful -
Hug
3 ReactionsHi Sue. I will be seeing the infectious disease doctor on Monday so will find out about treatment. My pulmonary doctor said that if it were her she would start treatment. I am having my Hill-rom vest delivered Tuesday. I have not been feeling well for the past week. Have that feeling of pneumonia in my chest. Could you explain what an flair up feels like. Just wondering if that is what’s going on with me. Also I have really dry cotton mouth and I am constantly drinking water that I boil. Have you had that problem? We put a water filtration and bacteria on our house water system. I have a hot tub however I have not been in it in the last 5 years. Probably have only used it 10 times in 15 years. Doctor said I probably got it years ago whenI used it. I have always enjoyed my hot showers too. Do we ever really know how we got this? Husband says we will never know so stop trying.
Started a response earlier and lost it. Have you tried other airway clearance and failed?
Exacerbation - asthma attacks and worse cough, then thicker or colored sputum, shortness of breath, tight or painful chest, low energy, bad fatigue, and fever.
As soon as it starts I add levalbuterol neb to 7%saline and increase to 2-4x a day. If it progresses to tight chest, call doc and start steroids. If it gets to fever, call doc for a course of antibiotics. Never got beyond, so I don't know what would be next.
May I ask why you are going to use the vest? Have you tried more conservative airway clearance methods?
Sue
I have tried a percussion massager on my chest and back morning and evening. I have tried the AirPhysio and the Doctor has given me an inhaler to try and bring up mucus. I do the huff coughing but I have not been able to bring up any mucus what so ever. I thought maybe I should try the best since it was totally covered by insurance.
Sue I see I spelled vest wrong. I am trying to find something that will help . I can hear it in my chest but can not bring it up so I swallow it.
I was recently diagnosed with MAC. I started the big 3 and had a bad reaction. I am off meds and now under observation until March—will be referrred to IFD dr. If disease has progressed. I am asymptomatic except for tiring easily. Is it better to wait until I have more symptoms? Will disease continue to progress at a slow rate? Thinking I will go to Duke or Chapel Hill MAC specialist for second opinion. This is overwhelming!