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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)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..."
Those are handy tips to know. Thank you Ling. I would like to visit areas of China that are not so touristy and perhaps has cleaner air. Mainly looking for older traditional villages, or places that haven't become Westernized.
@windwalker There are pros and cons of going for more or less touristy places in China. With places less developed, air may be cleaner, but there might be a whole different set of issues with bacteria, mold, and cleanliness of surroundings, such as hotels, restaurants and such. On the other hand, larger cities and more touristy places offer more modern facilities and easier access to medical care and any kind of supplies that one might need.
I also live in SouthEastern Wisconsin
Jo Ann Kiemen
@jkiemen Hooray! Looks like we have a few Wisconsinites on this forum. Go Badgers! Go Packers! Not that I'm a sports fanatic. But I'm very loyal to my state. 🙂
I lived in Milwaukee for 24 years before I moved south. Love me some Packers!
Hi im sophie and live in milwaukee with MAC. Do you have mac and when were you diagnosed....
Bonniewhite56, sophie1019,jkiemen, ling123, and if i recall a member named Paula has a Wisconsin connection!
Tdrell
I have noticed this pink orange film since I moved and have well water
Who do we inform?
JO Ann
Sofia, About a year ago my health problems began.
I moved to Savannah 3 years ago. My history is that I've had pneumonia practically every year for 6-7 years. First year here I had it again. I developed a very bad cough that would not go away a year ago, doctor referred me to Pulmonary doctor and he began to run test upon test upon test.
I am going to mayo for second opinion next month.
I miss Milwaukee but not the weather. Not sure the humidity here is healthy for me though.
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@tdrell No, I live in Madison and have been here the whole time since I moved to the States for graduate school. Love the city and have made it my home now. The flight from Chicago to Beijing is about 13 hours each way. Of course if you count in the time to fly from Madison to Chicago plus the connecting time at the airport, it is usually about 15-16 hours. I have been traveling to visit my family in China nearly every year since 1996. About good genes, it may be more complicated if you look at both sides of my genes. My paternal grandmother lived to 96. But she and all her 3 sons had diabetes. It didn't seem to affect her much as she was never even on any medication. But both my dad and his younger brother died of complications from the disease. But my dad still lived to 83. Not bad considering. When my dad was still living, he and my mom came to visit me and my middle brother (who lives in Richmond, VA) in 1997 and 2003. My dad suffered a stroke on the flight home after the second visit. He lived another 3 years, pretty miserably. So besides my lung problem, which really has not given me too much trouble with daily living, I'm doing my very best to keep my blood sugar in check. Several of my cousins on my father's side have already been diagnosed with diabetes. Family curse, as we call it. I was diagnosed with pre-diabetes about 4 years ago but the blood sugar has been within the normal range for the past 3 years after working hard on my diet and keeping active by playing tennis, hiking and walking. Whew, it's not easy. But compared to some of you guys on this forum who are fighting much harder fight with more severe health problems, I'm still the lucky one.