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 🙂

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@lisalucier

Hi, @amn17 - I agree with you, it would be great to know more about how others with NTM/MAC manage working and holding down a job while dealing with NTM/MAC and side effects of medications. Hoping that members like @auntgranny @windwalker @alleycatkate @flib @ling123 and @ginak will share some of their thoughts on this topic and also offer any insights about jobs to avoid with this disease. They may also have some opinions specifically about your work as a hairdresser dealing with hair, hair products and blow drying hair affecting your MAC.

Has your doctor weighed in on your consideration of a career change, @amn17? Where are you leaning currently as far as staying with your hairdresser position or making a change?

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Hi sorry it took so long to respond. My notices are going to my SPAM folder and I have been away. Although I have bronchiectasis and MAC/MAI (diagnosed from a lung resection 2 years ago to have a nodule removed). I don’t have any symptoms. No weight loss, fatigue, night sweats. I have never been prescribed any antibiotics so I have no side effects. I use my Aerobika twice a day with 50 breaths each time for lung clearance. I just recently retired, I was a Speech teacher in a NYC public school. I don’t think my job was very physically difficult so I had no problems going to work. I’m sorry I can’t be of much help. I have noticed a lot of the members seem to work in education or in the medical field, (nurses). I can’t remember which member was keeping track of everyone’s profession to see if there was some commonality between those of us with MAC, I’m not sure if she ever found anything, but, unfortunately, I don’t remember who it was. Personally, I would be careful about breathing in the types of chemicals you must deal with daily; hairspray, straightening solutions, dyes, etc. No need to put any additional stress on our lungs. Definitely speak to your Dr to make an informed decision. Best of luck.
Gina

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@windwalker

@ann17, Hello. Fatigue has been the greatest problem for many of us with this disease. That alone makes it difficult to go off to a daily job. I left the workplace in 2005. I was too ill to continue. I went on disability in 2007. I was fortunate enough in that I had rental income to suppport me along with my husband's financial support. @auntnanny and @alleycatkate both brought up good points about the aerosols and chemicals involved in hair salons. You didn't mention whether or not you also have bronchiectasis. If you do, all of those fumes are a no-no. For example: if I use hairspray on my hair, I will cough non-stop all day. Moroccan oil...forget about it! The smell of it tears me up. Is there any way you can move your business to your home? That way you could set your own hours and save on space rental. You could advertise that you have a chemical free zone for those with asthma and other lung issues. I would go to a salon like that if they had one here. I actually left my hair appt. once due to the heavy smell of a Brazillion Blow-out in there. If you are considering a carreer change; perhaps some kind of office job where you are not on your feet. Please keep me posted on what you decide. Before I forget, were you also diagnosed with bronchiectasis?

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@windwalker Hi, thanks so much for your response. I do have bronchiectasis and MAC. I don't work with bleach or hair colour right now, just hair product as I work at a blow-dry bar and not a full salon. I am considering a career change in the long run because as you said this job is very physical and one way or another involves using chemicals. But till then I might have to stick with it for a bit longer.
I should mention I was diagnosed 2 years ago and but I didn't have any symptoms as in night sweat or weight loss. Untill recently I had few episodes of coughing up blood and chest pain. I am better now and on more antibiotics but I find my lungs more sensitive now to dust and so forth... I will keep you posted after I speak to my Doctor about it.

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Hi there. Yes...I've continued to work full time but thank Goodness I don't have an extremely physical job. My career is in employment law/human resources. I've been at my company for years and am fortunate enough to work for one where I can eat a lunch at my desk then go lay down in the women's lounge for an hour to get me through the day. It's hard no matter what kind of job we have dealing with this disease. Some times are better than others. I get "flare ups" causing me to get the fevers and night sweats back along with the digestive issues from the meds and this disease and I end up being depleted of my nutrients etc. I just listen to my body and rest when I can. Every morning is a challenge though - full of anxiety of facing the day. Hang in there.

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@ginak

Hi sorry it took so long to respond. My notices are going to my SPAM folder and I have been away. Although I have bronchiectasis and MAC/MAI (diagnosed from a lung resection 2 years ago to have a nodule removed). I don’t have any symptoms. No weight loss, fatigue, night sweats. I have never been prescribed any antibiotics so I have no side effects. I use my Aerobika twice a day with 50 breaths each time for lung clearance. I just recently retired, I was a Speech teacher in a NYC public school. I don’t think my job was very physically difficult so I had no problems going to work. I’m sorry I can’t be of much help. I have noticed a lot of the members seem to work in education or in the medical field, (nurses). I can’t remember which member was keeping track of everyone’s profession to see if there was some commonality between those of us with MAC, I’m not sure if she ever found anything, but, unfortunately, I don’t remember who it was. Personally, I would be careful about breathing in the types of chemicals you must deal with daily; hairspray, straightening solutions, dyes, etc. No need to put any additional stress on our lungs. Definitely speak to your Dr to make an informed decision. Best of luck.
Gina

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@ginak Hi Gina. It was me who is keeping track of what our member's occupations are/were. Nurses came in first, followed by teachers on those who are suseptible to Mac infection.

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@amn17

@windwalker Hi, thanks so much for your response. I do have bronchiectasis and MAC. I don't work with bleach or hair colour right now, just hair product as I work at a blow-dry bar and not a full salon. I am considering a career change in the long run because as you said this job is very physical and one way or another involves using chemicals. But till then I might have to stick with it for a bit longer.
I should mention I was diagnosed 2 years ago and but I didn't have any symptoms as in night sweat or weight loss. Untill recently I had few episodes of coughing up blood and chest pain. I am better now and on more antibiotics but I find my lungs more sensitive now to dust and so forth... I will keep you posted after I speak to my Doctor about it.

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@amn17 Yes! Please do keep me posted.

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@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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