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My mother was recently diagnosed with MAC disease. I'm curious about the hobbies such as gardening or working in soil quite often or working in an area were there were many pollutant facilities such as Monsanto, grain processing plans, power companies, etc. She is a 69 year old white female and very thin. She's never smoked a cigarette in her life, she is very active, and she has not been diagnosed with any other diseases. She simply went in for an outpatient surgery and was required to have a chest X-ray before getting surgery and that's when they discovered it. She had a sputum test last week, and we are waiting 2 weeks for the doctor to explain the results to us. They said they wanted to delay her appointment, so they can let the culture sit a bit longer before they can determine what course of antibioics she should take. We are just trying to figure out what may have caused this as she Was a distance runner and worked for 20 years in a very polluted area of the Midwest Where several companies have been fined billions of dollars were such. We are also concern that she may have obtained it from gardening her entire life and working with soil. Thank you so much for your feedback. It's greatly appreciated.
Replies to "My mother was recently diagnosed with MAC disease. I'm curious about the hobbies such as gardening..."
I did allot of gardening before I got it. I have had both types of CT. I think the Hi Res showed more than the regular.
Hi cemcfic: My sister in law loves to garden, though not every day, and she was just diagnosed with Mycobacterial gordoni, which is from the soil. It is not as dangerous as mycobacterial avium but interesting that your mom gardens. She should definitely wear a mask from now on when gardening. Interesting that she lived in area high with farming pollutants. Monsanto is the devil, killing us all. Anyhoo,
She should keep exercising, and trying to hawk up all the sputum she can. so less secpndary infections xo
@cemcflc , Hello, and welcome to our group. Do you have a first name? I am sorry for your mother's diagnosis. MAC is found everywhere, so it would be impossible to know where she picked it up specifically. The two things you mentioned are good possibilities. Potting soil holds the highest concentrations of harmful bacteriums, billions per teaspoon. (I will not go near the stuff any more) The pollution could have done damage; your mom may have bronchiectasis, a lung condition that is prone to MAC. Incidentally, IF she does have bronchiectasis, she may have gotten that from the pollution, or could be genetic. Most cases of MAC can be traced back to your own drinking water. There are postings on this blog site under the main heading of 'MAC/bronchiectasis' that lists topics. You can go there and read about how people can contract this disease and also how to avoid reinfection. MAC isn't always a super serious infection, but it can easily turn into one and become life threatening. You and your mom would do well to educate yourselves as much as possible on this. A good source for info is to read posts by @katemn. I am glad that you found us, this group is a wonderful source for support and information. Please feel free to ask questions or share your mom's experiences in dealing with this. We are here for you.
Hi, Wind Walker. My name is Angela and my mother's name is Barb. I can't tell you how much I appreciate your lengthy feedback and kindness. I spoke to a scientist named doctor Chris Miller from Canada and he is working with a prominent just on clinical trials that involve the inhalation of nitric oxide which has shown significant success with cystic fibrosis patients. We are intrested and seen what those clinical trials show at the end of January. They have not yet been approved yet in the US. I am going to take a look at the other forum that you mentioned on this site and am hopeful my mother's doctors will be able to determine exactly what type of antibioics she needs to take. Thank you once again.
...prominent pulmonologist; not just
@windwalker One thing I forgot to mention is that she does have gastric reflux, And she often chokes when drinking water or eating food. She also has a terrible cough now. See coughs up a lot of phlegm.
Hi I was accepted for Doctor Miller's nitric oxide experiment, but have to move to
Vancouver Canada for 3 weeks. One of the side effects is internal bleeding, possible, that scared me. I also don't know what to do with my big dog. I'll talk to my doc about it. It's 3 weeks of treatment in the hospital, one hour of breathing 3 times a day of the nitric oxide. They provide lunch but you have to get own place.
@cemcflc , Angela, gastric reflux, also known as GERD is quite common with this disease. Many doctors speculate that it is the cause of bronchiectasis, which is susceptible to MAC. Some folks get MAC without the bronchiectasis as well. Coughing up phlegm is good to do because it is getting it out of the lungs. Once she gets on some kind of antibiotics, her cough should lessen or even go away. I had choking issues too whenever I would eat. I had my throat widened two years ago during a routine endoscope procedure. They said I would need this done every few years. I am beginning to choke again, so it probably is time to do it again. It is so nice afterwards to be able to swallow normally. Has your mom ever had this done?
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I'm most intrested in learning from all of you if you worked with soil a lot, worked in a city with lots of pollutants in the air, and what area within the US that you are from.... In addition to any other valuable feedback we could use when speaking with her doctor. Lastly did any of you have a high resolution CT scan; rather than just a regular CT scan? From what I read on Mayo clinic they recommend a high resolution CT scan. Thank you, once again.