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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Jan 19 10:15pm | Replies (9354)Comment receiving replies
Hello, Kate
What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....
Thank you, Kathy
Replies to "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..."
@jentaylor There definitely should be a list such as you mention. Privacy concerns could be overcome by the patient signing an agreement to be part of that, and the list should only be available to medical personnel with a "need to know".
JK
@contentandwell Exactly, JK!!!
Thank you for relying so quickly.
My first name is Jo Ann. I discovered I had MAC when I was treated for pneumonia. Has anyone had experience with the nodules that apparently are associated
with this condition? I just don’t know that much on what to further expect?
Yes I have noticed that
I am also a Nurse.
Jo Ann
I better start changing my eating patterns. I get home from work pretty late and had been eating late way too close to bedtime.
No one has officially told me I had GERD but I do seem to have an irritated throat allot.
Since that is one of the symptoms, I should try working on this.
Jo Ann
Hi Jo Ann. I have several nodules. That is because of the type of MAC - it can be nodular or cavitory disease.
Would Alpha Trypsin gene make it more difficult to clear your lungs from inhaled bacteria such as MAC?
Jo Ann
Did you have allot of side effects on the medications?
Not sure in my case when to start treatment.
JO Ann
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@windwalker Wow, I would asssume that ALL US doctors would know what Valley Fever is!!!! You think that would be included in there general medical school teachings! That does make you wonder than if it (whatever I have) could be a disease foreign to the US doctors knowledge!
When I say we were in remote or "primitive" parts of Kenya, I mean primitive in the full sense of the word! We would drive 7 hours to reach the nearest "city" area of a remote town, then the next morning, drive three more hours on dirt/make shift roads (that were used by Land Rovers 2 times per year!) to our clinic site.
At the clinics (which was a make shift structure used for either a school &/or church), waiting for us would be 50 Maasai people...ranging in age. These people know that the doctor is there 2 times per year (know 4 times per year with wider medical treatment services including dental) & walk up to 2 weeks to get a chance to be seen & get medicine. The illness varied but there were are a lot of very sick people, somehow "surviving" or rather "sufferring". A lot of Malaria, intestinal worms, infected skin punctures/cuts & (many on the bottom of feet due to no shoes or burns from fires used for cooking), a lot of HIV/AIDS (which I have been tested for many times & always negative!). There were other illnesses in addition. One woman carrying her listless baby, in hysterics while her child was dying before her, begging for help...sadly we weren't able to offer any lasting treatment to save her young child (toddler).
But who knows what I may have been exposed to!!!! It is a scary thought! But it's obviously not contagious since no one has gotten sick around me in the last 17 years since going there! It really makes you wonder!!!!