Working and holding a job while suffering from NTM (MAC)

Posted by amn17 @amn17, Oct 6, 2018

Hi, is everyone working and holding a job while dealing with NTM? If so I'd like to hear about your experinces and what kind of jobs you have and how do you manage woking while dealing with a chronic disease and side effects of medications. Not to forget the emotional and psychological pressure of this disease.
I am a hairdresser and have been off work and considering career change because I find my job physically vey demanding and it makes me too tired and I believe I shouldn't push myself too hard but instead keep my immune system high and not stress myself much. Can anyone offer their opinion or medical advice on whether as a hairdresser dealing with hair and hair products and blow drying hair can affect my MAC or not?
Also which job are better to avoid as a NTM/MAC patient and are more harmful to the lung condition.
Thank you in advance 🙂

@windwalker my bronchiectisis, pseudonomas, and MAC were diagnosed in Feb 18. If you're keeping a record of our professions take note that I was a manicurist in a hair salon for 24 years. Just natural nails, not artificial. But the chemicals and aerosols I was around were tremendous. Thanks for all you do in this group. Margie

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windwalker……… I have had sputum testing done recently and it showed a heavy dose of pseudomonas. Mayo's prescribed Levaquin for 14 days. Did that. It didn't help and I emailed them for something more. Dr. Moua is now prescribing 2 weeks of 500 mg cefuroxime (twice daily). He went on to suggest starting tobramycin and I believe you have experience with that, right? One month on and one month off (twice daily). Said I needed to come up there for an initial test of it to be sure I can tolerate it. Also said I would probably need more nebulizing equipment. Did you find this med difficult to deal with? I'm just a little nervous. Will pick up the new cefuroxime tomorrow and will be calling Mayo's to set up an appointment to make the 10-hour trip up there. I would expect it to be a month or so before I can get it. Just wondering if you had the preliminary test to see if you could take it before starting. Any advice appreciated…….. thank you

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@margiebanks

@windwalker my bronchiectisis, pseudonomas, and MAC were diagnosed in Feb 18. If you're keeping a record of our professions take note that I was a manicurist in a hair salon for 24 years. Just natural nails, not artificial. But the chemicals and aerosols I was around were tremendous. Thanks for all you do in this group. Margie

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@margiebanks Hi Margie. Thank you for that tidbit about your occupation. I noted it in my notebook. BTW, I am so glad that you posted where to buy the sodium chloride at a good price. I do not have secondary insurance and my Medicare plan does not cover it. Did you have damage to your property from that last hurricane?

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@windwalker

@margiebanks Hi Margie. Thank you for that tidbit about your occupation. I noted it in my notebook. BTW, I am so glad that you posted where to buy the sodium chloride at a good price. I do not have secondary insurance and my Medicare plan does not cover it. Did you have damage to your property from that last hurricane?

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@windwalker So glad that info can help you. I lost a few shingles and a couple of trees but no structural damage. All around me tho the destruction was incredible.

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Hi, I'm 66 and still working with MAC. Yes, it is a challenge getting ready for work in the morning as I usually have a lot of mucus to clear and it is exhausting trying to cough it up. I was diagnosed about 20 years ago and have gone up and down in terms of severity of symptoms. I did a month of intravenous antibiotic therapy quite a few years ago, which helped somewhat temporarily. I have been reluctant to try the 3 oral antibiotic regimen due to the side effects. It is embarrasing to have to cough up mucus all day long, as I work in an office around others. Being around toxic fumes as in hair sprays and chemicals certainly makes my lungs worse, so I try to avoid that. It's nice to know that I'm not alone in this mucus battle!

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@haiku I too find all the coughing embarrassing That plus fatigue keeps me away for many social interactions. I hate the mucus, most especially when I get into bed, longing to sleep and I start coughing. I have to get up and bend over to help drain the mucus, sometimes 2or3 times. This happens most nights and takes the pleasure out of going to bed.I nebulizer twice a day, helps some. My cat scan regularly show very little progression of the MAC…I guess it's the bronchiectasis, in part that is causing the coughing. No body seems to really know..

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@flib

@haiku I too find all the coughing embarrassing That plus fatigue keeps me away for many social interactions. I hate the mucus, most especially when I get into bed, longing to sleep and I start coughing. I have to get up and bend over to help drain the mucus, sometimes 2or3 times. This happens most nights and takes the pleasure out of going to bed.I nebulizer twice a day, helps some. My cat scan regularly show very little progression of the MAC…I guess it's the bronchiectasis, in part that is causing the coughing. No body seems to really know..

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I had same thing terrible cough and phelgm. Doctor put me on symbicort. Wonderful no more cough or phelgm

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@flib

@haiku I too find all the coughing embarrassing That plus fatigue keeps me away for many social interactions. I hate the mucus, most especially when I get into bed, longing to sleep and I start coughing. I have to get up and bend over to help drain the mucus, sometimes 2or3 times. This happens most nights and takes the pleasure out of going to bed.I nebulizer twice a day, helps some. My cat scan regularly show very little progression of the MAC…I guess it's the bronchiectasis, in part that is causing the coughing. No body seems to really know..

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@flib Hi. Have you been tested for pseudomonas recently? Turns out, that is what caused me to cough for so long. Was put on tobramycin to get rid of it. Can't assume current antibiotics would have killed it; I caught mine while on cipro and doxycycline.

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@haiku444

Hi, I'm 66 and still working with MAC. Yes, it is a challenge getting ready for work in the morning as I usually have a lot of mucus to clear and it is exhausting trying to cough it up. I was diagnosed about 20 years ago and have gone up and down in terms of severity of symptoms. I did a month of intravenous antibiotic therapy quite a few years ago, which helped somewhat temporarily. I have been reluctant to try the 3 oral antibiotic regimen due to the side effects. It is embarrasing to have to cough up mucus all day long, as I work in an office around others. Being around toxic fumes as in hair sprays and chemicals certainly makes my lungs worse, so I try to avoid that. It's nice to know that I'm not alone in this mucus battle!

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@haiku444, Good morning. I see that you are new to our site. Welcome to our group. It is a pain in the neck to cough so much; I did it for nearly 10 yrs. Went on tobramycin and got rid of it in 2016. There are other treatment options besides the 'Big 3'. My dr at Mayo doesn't use that method to treat mac. He said it is over-kill and that 18 months isn't long enough to kill out the mac completely. He uses alternating monthly single antibiotics for years. It took me a yr to knock out mac in 2013, but stayed on the meds for two more yrs to keep it away. Then caught pseudomonas in 2016 and started a diff med regimen. Knocked out the pseudo in 30 days, but continued the meds up to the present to keep it away. If you saw me 11 yrs ago, you would not believe that I was the same person that you see today. Girl…..I was SO sick. I was so out of breath that I could not walk 10 feet without sitting down, I coughed literally non-stop 24\7. That cough caused me to pull just about every muscle in my torso, stressed my bladder, stopped me from going to movies, restaurants, the mall, etc. Today, I breathe clearly, never cough, can walk big blocks at a time and ride my bicycle endlessly. I have permanent damage in my lungs that cause me some shortness of breath, but, overall; my quality of life has improved greatly. I believe we can all get there with the right treatment. Many people freak out when they get diagnosed with MAC; so I am glad that you posted that you have been living with it for 20 yrs. I know when I had it, I thought I would be dead in 2 yrs. I went out and had my Living Trust set up, (which we should all do anyway).

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@windwalker

@haiku444, Good morning. I see that you are new to our site. Welcome to our group. It is a pain in the neck to cough so much; I did it for nearly 10 yrs. Went on tobramycin and got rid of it in 2016. There are other treatment options besides the 'Big 3'. My dr at Mayo doesn't use that method to treat mac. He said it is over-kill and that 18 months isn't long enough to kill out the mac completely. He uses alternating monthly single antibiotics for years. It took me a yr to knock out mac in 2013, but stayed on the meds for two more yrs to keep it away. Then caught pseudomonas in 2016 and started a diff med regimen. Knocked out the pseudo in 30 days, but continued the meds up to the present to keep it away. If you saw me 11 yrs ago, you would not believe that I was the same person that you see today. Girl…..I was SO sick. I was so out of breath that I could not walk 10 feet without sitting down, I coughed literally non-stop 24\7. That cough caused me to pull just about every muscle in my torso, stressed my bladder, stopped me from going to movies, restaurants, the mall, etc. Today, I breathe clearly, never cough, can walk big blocks at a time and ride my bicycle endlessly. I have permanent damage in my lungs that cause me some shortness of breath, but, overall; my quality of life has improved greatly. I believe we can all get there with the right treatment. Many people freak out when they get diagnosed with MAC; so I am glad that you posted that you have been living with it for 20 yrs. I know when I had it, I thought I would be dead in 2 yrs. I went out and had my Living Trust set up, (which we should all do anyway).

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Hi Terri, thanks so much for your input! Your story is inspiring. Its so easy to let any health challenge get you down. I am interested in knowing more about the regimine you describe. Wonder if I could have a phone consult with your Dr. at Mayo? The pulmonologists and infectious disease doctors I have seen over the years are dead set on the 3 antibiotics for 18 mo. protocol. I'm on Maui, so there are not a lot of choices here. My doctors say that this is what the National Jewish Center recommends. I finished a round of cefpodoxime a couple weeks ago and that really helped. Started Dulera, but I dont like the mouthfeel. I'm much more into the natural holistic approach to health and healing, but I also know that when I'm drowning in mucus and exhausted from coughing, there is some relief to be had from a short course of an antibiotic. I do try to limit it to twice a year. Please let me know if you think your doctor might be available for a consult. Aloha, Sharon

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