Sue, thank you for your reply. We will be going to
South Carolina beach, so I assume this will be ok if I am careful. My MAC diagnosis has caused a lot of stress!
After living with this crazy stuff for years, and a few other medical issues, I have decided to take the advice of the ID doc and pulmonologist I have seen for almost 3 years.
"Take reasonable precautions, and then go live your life. If you stay as healthy as you can with exercise, airway clearance, asthma and mucus management, healthy diet, and avoiding sick people, you will be fine. Bronchiectasis is something you can live with."
I believe that - my Mom had it for many years, and died in her mid-80's from a completely different disease. So at 70, that is the advice I follow.
So, the same as I don't play basketball & volleyball that will wear out my 11 year old hips, I don't sit in hot tubs where there is probably a lot of NTM, or dump dirt and mulch where I can raise a cloud of dust. So far, this has worked for 2 1/2 years with only one exacerbation. Refusing to be afraid of anything & everything has lowered my stress level immensely so I can enjoy my life.
After living with this crazy stuff for years, and a few other medical issues, I have decided to take the advice of the ID doc and pulmonologist I have seen for almost 3 years.
"Take reasonable precautions, and then go live your life. If you stay as healthy as you can with exercise, airway clearance, asthma and mucus management, healthy diet, and avoiding sick people, you will be fine. Bronchiectasis is something you can live with."
I believe that - my Mom had it for many years, and died in her mid-80's from a completely different disease. So at 70, that is the advice I follow.
So, the same as I don't play basketball & volleyball that will wear out my 11 year old hips, I don't sit in hot tubs where there is probably a lot of NTM, or dump dirt and mulch where I can raise a cloud of dust. So far, this has worked for 2 1/2 years with only one exacerbation. Refusing to be afraid of anything & everything has lowered my stress level immensely so I can enjoy my life.
Thank you Sue. You are always a calm voice of reason. Just started treatment for pseudomas with Levaquin for 14 days and nebulizing Tobi 2x day for 60 days. Had tenanitis before starting so watching for any changes. By end of this treatment, MAC test should be back. Anxious about treatment to come and decisions to be made. But, one day at a time. You are reassuring that life can be lived with treatment.
After living with this crazy stuff for years, and a few other medical issues, I have decided to take the advice of the ID doc and pulmonologist I have seen for almost 3 years.
"Take reasonable precautions, and then go live your life. If you stay as healthy as you can with exercise, airway clearance, asthma and mucus management, healthy diet, and avoiding sick people, you will be fine. Bronchiectasis is something you can live with."
I believe that - my Mom had it for many years, and died in her mid-80's from a completely different disease. So at 70, that is the advice I follow.
So, the same as I don't play basketball & volleyball that will wear out my 11 year old hips, I don't sit in hot tubs where there is probably a lot of NTM, or dump dirt and mulch where I can raise a cloud of dust. So far, this has worked for 2 1/2 years with only one exacerbation. Refusing to be afraid of anything & everything has lowered my stress level immensely so I can enjoy my life.
Sue, you have made my day! I like your attitude. I’m trying to live one day at a time and do the best I can to cope with MAC. My greatest fear, however, is that I will start coughing up blood
again—a lot of blood !
I hope you continue to do well❣️
The treatment for MAC is onerous for many people, but if you can stick with it to "knock down" the infection you can have a pretty normal life.
When I was having issues taking the 3 antibiotics, I found several things that helped me cope.
First, nausea was my companion - I learned I could take all 3 meds at night, just before bed, with a small amount of starchy food and go to sleep. While not ideal, it was my best time of day.
Second, my appetite was nonexistent, so I forced myself to eat a tiny amount of high quality food every 1-2 hours (like 1 oz of cheese, 1/4 c of cashews, 1/2 a protein drink)
Third, a good probiotic.
I had a lot of fatigue, so I don't know if I could have managed to work full time, but I did about 3 full days a week between volunteer work and grandchild care. Is there any chance you can cut back on work without retiring?
Sue
Good gosh Sue! You must be a saint!! I was browsing through and saw so many posts with your words of guidance and wisdom. I’m a newly diagnosed MAC. With mild Bronchiectasis. Has completely took me from a vigorous 58 year old, doing 2 hour workouts three times a week, working full time, and watching 3 small grandchildren almost daily— to being out of breath walking around my house. Fever for 120 days and counting with chest pain, fatigue, breathless. SUCH a 360 for my whole world and now add the anxiety and depression. Need help!!
Good gosh Sue! You must be a saint!! I was browsing through and saw so many posts with your words of guidance and wisdom. I’m a newly diagnosed MAC. With mild Bronchiectasis. Has completely took me from a vigorous 58 year old, doing 2 hour workouts three times a week, working full time, and watching 3 small grandchildren almost daily— to being out of breath walking around my house. Fever for 120 days and counting with chest pain, fatigue, breathless. SUCH a 360 for my whole world and now add the anxiety and depression. Need help!!
Um, no, my friends and family will assure you that I am no saint. But I am a Mayo Connect Mentor, a volunteer who watches a couple of specific topics and responds to others.
I want to assure you that anxiety and depression are VERY normal first reactions to the diagnosis of MAC and bronchiectasis. Your best ally is to get informed, and Mayo Connect and National Jewish Health (NJH - https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos) are 2 excellent places to start.
I hear you as far as the rapid fall from vigorous to wiped out! When I was diagnosed with MAC and bronchiectasis four years ago, I had been ill at first intermittently and then constantly with one asthma attack or lung infection after another for four years. I couldn't walk a block, and mostly just coughed and slept.
Worse, I was fearful and had never heard of MAC or bronchiectasis. And my pulmonologist was less than helpful. All of that led me to this group and Mayo Connect where I was able to get good information, support and encouragement from wonderful people who understood.
I learned so much from those who had walked this path before me, and were walking it with me that when I was asked to volunteer I was honored to accept.
Most of all, with this "rare disease," I learned that I need to be my own best advocate, and be as educated as possible because not all the professionals have the time to keep up on the latest treatments for a condition they may only see rarely. The second thing I learned was to ask questions. And the third is that, with treatment and good personal care, bronchiectasis is a condition you can live with, and are unlikely to die from.
So please take a deep breath, read here, look at NJH if you like, ask all the questions you have, and make sure you have a good care team.
What is the most pressing question I can answer for you this weekend?
Sue
Um, no, my friends and family will assure you that I am no saint. But I am a Mayo Connect Mentor, a volunteer who watches a couple of specific topics and responds to others.
I want to assure you that anxiety and depression are VERY normal first reactions to the diagnosis of MAC and bronchiectasis. Your best ally is to get informed, and Mayo Connect and National Jewish Health (NJH - https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos) are 2 excellent places to start.
I hear you as far as the rapid fall from vigorous to wiped out! When I was diagnosed with MAC and bronchiectasis four years ago, I had been ill at first intermittently and then constantly with one asthma attack or lung infection after another for four years. I couldn't walk a block, and mostly just coughed and slept.
Worse, I was fearful and had never heard of MAC or bronchiectasis. And my pulmonologist was less than helpful. All of that led me to this group and Mayo Connect where I was able to get good information, support and encouragement from wonderful people who understood.
I learned so much from those who had walked this path before me, and were walking it with me that when I was asked to volunteer I was honored to accept.
Most of all, with this "rare disease," I learned that I need to be my own best advocate, and be as educated as possible because not all the professionals have the time to keep up on the latest treatments for a condition they may only see rarely. The second thing I learned was to ask questions. And the third is that, with treatment and good personal care, bronchiectasis is a condition you can live with, and are unlikely to die from.
So please take a deep breath, read here, look at NJH if you like, ask all the questions you have, and make sure you have a good care team.
What is the most pressing question I can answer for you this weekend?
Sue
Thank you for SO much for all the information and quick response!! The biggest question on my mind right now is to do treatment or not. The last 4 months have been a series of testing to find out why I feel so bad then after diagnosis, I’m “burning up” the internet- To find that the treatment is difficult and may very well make me feel worse.
My CT pics show nodular Bronchiectasis but mild, and 3 pulmonologists said they are not that bad or dramatic. My lung function tests are good as well and my oxygen levels stay in the high 90’s. But I feel bad every day, run a fever every day,
Definitely not the quality of life
I want to live in my retirement.
Any insight would be greatly appreciated! Thanks! D
Good gosh Sue! You must be a saint!! I was browsing through and saw so many posts with your words of guidance and wisdom. I’m a newly diagnosed MAC. With mild Bronchiectasis. Has completely took me from a vigorous 58 year old, doing 2 hour workouts three times a week, working full time, and watching 3 small grandchildren almost daily— to being out of breath walking around my house. Fever for 120 days and counting with chest pain, fatigue, breathless. SUCH a 360 for my whole world and now add the anxiety and depression. Need help!!
When did you first notice symptoms and make your pulmonary appointment??
Did your walking difficulty happen within a year of diagnosis? I am waiting for my second sputum test for contamination to verify my MAC. No antibiotics yet. Have you began antibiotics yet? I hope you breathing improves with time and good treatment. So young to have this diagnosis. Will send hope and prayer.
Sorry nana, just read previous texts and some question were answered. Has anyone in the group, I wonder, ever moved to an area where MAC is low? I live off the Gulf Coast and might consider moving depending on what my future brings.
Sorry nana, just read previous texts and some question were answered. Has anyone in the group, I wonder, ever moved to an area where MAC is low? I live off the Gulf Coast and might consider moving depending on what my future brings.
Well, my ID doc and the people at NJH all say that MAC & NTM are everywhere, though more prevalent in some places compared to others, so the only truly safe place to move would be into a bubble. If I didn't already have access to really good medical care (overall, not just one disease) and close ties to my two homes, I might consider moving to an area with better care or a large multispecialty center like Mayo. If the new place also offered other quality of life features.
In early days with MAC and bronchiectasis, I was very anxious about making many uncomfortable adjustments in my life. As time progressed, I got some very wise advice from my ID doc "MAC is an infection that is slow to grow and slow to go. We can manage it so you can have a good life. Bronchiectasis, by and large, is a disease you live with, not die from, Take reasonable precautions, then go out and live your life."
Also, over the past 4 years, I have learned that many people who are MAC-positive do not rely on antibiotics. I am one of them. I was very ill when diagnosed, had both pseudomonas and MAC, a went through over 18 months of antibiotics, improving but not cured. Finally, the side effects were so bad that I quit, with the blessing of my docs. I now rely on mucus thinning meds, 7% saline nebs and airway clearance plus exercise and a healthy diet. So far, in 2 1/2 years no relapse, and my CT is the same.
I look forward to hearing the results of your second culture. Are you comfortable with your doctor's experience in treating MAC?
Sue
Thanks so much Sue. So brave to take the3 and so brave to stop them. I liked your hearing your doctors philosophy. I an not too comfortable with my doctors at this point. One was very sure of my Lady Windermere disease on seeing CT with nodule and cavitation and tree in bud / bronchiectasis, etc, but the interview was short and the elderly doc spoke more about him than me and offered minimal info. He asked me to call back in a week to see if I was producing sputum and I did, twice, and he did not return the calls. No plan for follow up other than that. He prescribed mucin and Symbicort inhaler. No follow appointment. I did see another pulmonoligist in the same system while waiting for referred older doc. He could see me within days of my primary doc’s getting CT results. This pulmonologist was young, had another specialty in sleep issues, seemed less experienced, and was hard to understand with an accent and would not respond much to my questions. So I don’t know if I should look further or see if an infectious disease doc will contacted for referral. Both pulmonologists were from the same health system and prescribed different meds. None accepted my suggestion for Levelbuterol if it was appropriate as my hands shake with albuterol and steroids and muscles get so weak with prolonged steroids. Sorry for that long answer! I hope my immunology appt goes better this week! So happy you are doing ok without more antibiotic therapies!
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After living with this crazy stuff for years, and a few other medical issues, I have decided to take the advice of the ID doc and pulmonologist I have seen for almost 3 years.
"Take reasonable precautions, and then go live your life. If you stay as healthy as you can with exercise, airway clearance, asthma and mucus management, healthy diet, and avoiding sick people, you will be fine. Bronchiectasis is something you can live with."
I believe that - my Mom had it for many years, and died in her mid-80's from a completely different disease. So at 70, that is the advice I follow.
So, the same as I don't play basketball & volleyball that will wear out my 11 year old hips, I don't sit in hot tubs where there is probably a lot of NTM, or dump dirt and mulch where I can raise a cloud of dust. So far, this has worked for 2 1/2 years with only one exacerbation. Refusing to be afraid of anything & everything has lowered my stress level immensely so I can enjoy my life.
Sue
-
Like -
Helpful -
Hug
5 ReactionsThank you Sue. You are always a calm voice of reason. Just started treatment for pseudomas with Levaquin for 14 days and nebulizing Tobi 2x day for 60 days. Had tenanitis before starting so watching for any changes. By end of this treatment, MAC test should be back. Anxious about treatment to come and decisions to be made. But, one day at a time. You are reassuring that life can be lived with treatment.
-
Like -
Helpful -
Hug
1 ReactionSue, you have made my day! I like your attitude. I’m trying to live one day at a time and do the best I can to cope with MAC. My greatest fear, however, is that I will start coughing up blood
again—a lot of blood !
I hope you continue to do well❣️
Good gosh Sue! You must be a saint!! I was browsing through and saw so many posts with your words of guidance and wisdom. I’m a newly diagnosed MAC. With mild Bronchiectasis. Has completely took me from a vigorous 58 year old, doing 2 hour workouts three times a week, working full time, and watching 3 small grandchildren almost daily— to being out of breath walking around my house. Fever for 120 days and counting with chest pain, fatigue, breathless. SUCH a 360 for my whole world and now add the anxiety and depression. Need help!!
Um, no, my friends and family will assure you that I am no saint. But I am a Mayo Connect Mentor, a volunteer who watches a couple of specific topics and responds to others.
I want to assure you that anxiety and depression are VERY normal first reactions to the diagnosis of MAC and bronchiectasis. Your best ally is to get informed, and Mayo Connect and National Jewish Health (NJH - https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos) are 2 excellent places to start.
I hear you as far as the rapid fall from vigorous to wiped out! When I was diagnosed with MAC and bronchiectasis four years ago, I had been ill at first intermittently and then constantly with one asthma attack or lung infection after another for four years. I couldn't walk a block, and mostly just coughed and slept.
Worse, I was fearful and had never heard of MAC or bronchiectasis. And my pulmonologist was less than helpful. All of that led me to this group and Mayo Connect where I was able to get good information, support and encouragement from wonderful people who understood.
I learned so much from those who had walked this path before me, and were walking it with me that when I was asked to volunteer I was honored to accept.
Most of all, with this "rare disease," I learned that I need to be my own best advocate, and be as educated as possible because not all the professionals have the time to keep up on the latest treatments for a condition they may only see rarely. The second thing I learned was to ask questions. And the third is that, with treatment and good personal care, bronchiectasis is a condition you can live with, and are unlikely to die from.
So please take a deep breath, read here, look at NJH if you like, ask all the questions you have, and make sure you have a good care team.
What is the most pressing question I can answer for you this weekend?
Sue
-
Like -
Helpful -
Hug
2 ReactionsThank you for SO much for all the information and quick response!! The biggest question on my mind right now is to do treatment or not. The last 4 months have been a series of testing to find out why I feel so bad then after diagnosis, I’m “burning up” the internet- To find that the treatment is difficult and may very well make me feel worse.
My CT pics show nodular Bronchiectasis but mild, and 3 pulmonologists said they are not that bad or dramatic. My lung function tests are good as well and my oxygen levels stay in the high 90’s. But I feel bad every day, run a fever every day,
Definitely not the quality of life
I want to live in my retirement.
Any insight would be greatly appreciated! Thanks! D
When did you first notice symptoms and make your pulmonary appointment??
Did your walking difficulty happen within a year of diagnosis? I am waiting for my second sputum test for contamination to verify my MAC. No antibiotics yet. Have you began antibiotics yet? I hope you breathing improves with time and good treatment. So young to have this diagnosis. Will send hope and prayer.
Sorry nana, just read previous texts and some question were answered. Has anyone in the group, I wonder, ever moved to an area where MAC is low? I live off the Gulf Coast and might consider moving depending on what my future brings.
Well, my ID doc and the people at NJH all say that MAC & NTM are everywhere, though more prevalent in some places compared to others, so the only truly safe place to move would be into a bubble. If I didn't already have access to really good medical care (overall, not just one disease) and close ties to my two homes, I might consider moving to an area with better care or a large multispecialty center like Mayo. If the new place also offered other quality of life features.
In early days with MAC and bronchiectasis, I was very anxious about making many uncomfortable adjustments in my life. As time progressed, I got some very wise advice from my ID doc "MAC is an infection that is slow to grow and slow to go. We can manage it so you can have a good life. Bronchiectasis, by and large, is a disease you live with, not die from, Take reasonable precautions, then go out and live your life."
Also, over the past 4 years, I have learned that many people who are MAC-positive do not rely on antibiotics. I am one of them. I was very ill when diagnosed, had both pseudomonas and MAC, a went through over 18 months of antibiotics, improving but not cured. Finally, the side effects were so bad that I quit, with the blessing of my docs. I now rely on mucus thinning meds, 7% saline nebs and airway clearance plus exercise and a healthy diet. So far, in 2 1/2 years no relapse, and my CT is the same.
I look forward to hearing the results of your second culture. Are you comfortable with your doctor's experience in treating MAC?
Sue
-
Like -
Helpful -
Hug
2 ReactionsThanks so much Sue. So brave to take the3 and so brave to stop them. I liked your hearing your doctors philosophy. I an not too comfortable with my doctors at this point. One was very sure of my Lady Windermere disease on seeing CT with nodule and cavitation and tree in bud / bronchiectasis, etc, but the interview was short and the elderly doc spoke more about him than me and offered minimal info. He asked me to call back in a week to see if I was producing sputum and I did, twice, and he did not return the calls. No plan for follow up other than that. He prescribed mucin and Symbicort inhaler. No follow appointment. I did see another pulmonoligist in the same system while waiting for referred older doc. He could see me within days of my primary doc’s getting CT results. This pulmonologist was young, had another specialty in sleep issues, seemed less experienced, and was hard to understand with an accent and would not respond much to my questions. So I don’t know if I should look further or see if an infectious disease doc will contacted for referral. Both pulmonologists were from the same health system and prescribed different meds. None accepted my suggestion for Levelbuterol if it was appropriate as my hands shake with albuterol and steroids and muscles get so weak with prolonged steroids. Sorry for that long answer! I hope my immunology appt goes better this week! So happy you are doing ok without more antibiotic therapies!