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@kathyg

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

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Replies to "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..."

Heathert ...appreciate your offer to be CT resource to me....did have right hand done possibly 20 years ago....in addition to CT had a ganglion hiding by the radial artery...suspecting part of current pain in right and left hands....
Will be utilizing your input/ tips if surgery necessary...did you have a plastic surgeon?tdrell

@tdrell Also wanted to add that when I used our hot tub, my face was down
close to the water and I did breathe the effervescence from the bubbles. I know
Katherine will not get in a pool period, and who could blame her. I will get in
one if I happen to be at one with friends and take a quick dip only if I am so
hot I can't stand it. And, I do not get my head wet or put my face near the
water. I do swim in the ocean, (not often, I live 15 mins to the Atlantic), but
don't get my head wet etc. I DEFINITELY do not go into hot tubs. If you Google
'Hot Tub Lung' you can learn a lot about it and how that critters breed in the
water jets and pipes. Yuck!!  As for you swimming at your sister's pools,
that would be extremely hard to deny yourself. There are links about pools and
MAC. I would Google 'MAC swimming pools Tucson' or 'University of Arizona
Medical Center MAC lung health'  That University is a known up and rising
lung specialty hospital and are now doing lung transplants. I feel like they
would have some info. There is also a famous guy with a PHD that studies germs
of all kinds. I believe he wrote a book called "Germ Warfare". He used to have
free seminars at the U of A. I always wanted to go, but was too sick and lacked
energy to do so. This has peaked my curiosity again and will look him up. Please
let me know if you learn anything more about the pools in Tucson.
 

@tdrell That is a good idea. I had already written down all of his info
to contact him on another matter. It was either in a video or article of his, he
had mentioned that where pinkish/orange bacteria grows, MAC does not, and that
if anybody noticed this color growing in their tubs or sink drains; to let him
know. That they would like to have that info for research. We have that here in
S.C. My region near the ocean does anyway. We always know when it is time to
scrub the toilet because it will develop a pink ring at the water line. My
bathrooms don't get to the point of neglect that more pink is growing; but, I
have seen other people's with it growing on the tubs and shower curtains.
Anyway, I need to let him know that it is here. Now, I want to send a water
sample to the CDC to be tested. I got MAC in Tuscon, Az then moved to S.C. five
yrs ago and was treated for the MAC. It hasn't been back since it was cleared in
2013. I did get pseudomonas though last Spring. : (    As
horrible as MAC is, I do find it interesting.
 

@windwalker @tdrell, I remember that article including the pinkish bacteria also, it was mentioned on the NJH website, maby under sterilizing shower heads? There is an article about their being higher numbers of MAC in the air around any creeks or ponds, any body of water I guess, which is very interesting also, I will see if I can find it.

@tdrell no I diddnt have a plastic surgeon, I had an orthapaedic surgeon, you cannot even see the scars now. I had both hands done together, was a little tricky for a week, but not as bad as I thought.

Tdrell, yes it was not the usual airline, Canadian Pacific Airline , I started with in 1969, we had foreign bases so I lived in Honolulu for three years,flying to Fiji and Sidney, Australia.

I was also based in Lima ,Peru flying to Santiago,Chili and Buenos Aires, Argentina.
That was in the early eighties, they had a revolution going on there so we lived 45 Minutes outside of Lima in an unbelievable hotel that looked like a little village in The mountains...
one of our captains called it "The Land Of Ozz"

The first years , we would fly to Athens and stay one week, we would go to the islands and stay with the locals...we would come into Athens go to the hotel and ,take the uniform off and put on our jeans and rush to the boats that Onassis owned and go to the islands.

I also had a lot of nurses has colleagues, we had the best of times.
Talking about money..... I use to go to Acapulco ( which was really nice the in the 70's )on my days off I would go for a week, at the Holiday Inn right on the beach the room cost $10.00 per night

Not having any money for me it was the best of jobs,

Sorry , I am reminiscing too much......Hugs, Andrée

@windwalker It was when my 2 eldest children took on a paper run, of around 350 houses. I would fold all their papers and use the palm of my hand to run along the folds to make them stay folded, we did the run for 7 years.

PS: Flying and travelling that much did have its down sides but we did not see them we where young. Yes the conditions did affect the immune system, the jet lag etc. ..we had to take good care of ourselves..

There was a price to pay, my partner who was a pilot for forty years contacted Leukemia ( bone cancer) about four years after he retired,he was diagnosed with Multiple Myaloma, we where living in Mexico then in Lake Chapala, we had to come back to Vancouver when we found out about his cancer, he was sick for four years and he passed away eight years ago.
The Specialist told us it was due to radio activity in the cockpit...lots of pilots get brain cancer also after many years surrounded by all the electrical equipment for hours and years.

He loved flying so much that I remember he once said that ,if he had too he would pay to to his job, so he was happy with his career but left way too early.

Best, Andrée

@mariposa, Andree, that is just awful, you have been through alot with your partner. I had no idea that being a pilot had such risks.

Wow! That's impressive. My doctor refused to do them both at once. I had PT for a few months. Can't see any scar.