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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..."

@jentaylor,
Hey, I totally get where you are coming from in grieving the loss of income and
mental stimulation. I opened a Scottrade account and started growing money. I
charted and followed stocks like crazy. I amassed a small fortune by doing so.
The portfolio now gives me additional income every month. I used to be an
electrical systems designer. I drafted the plans for fire alarm systems in
hotels, gov't buildings and some rides at Busch Gardens. That job also included
sound systems for courtrooms and security cameras. I enjoyed that job, but any
time someone would come in my office and sneeze, guess what, I would
catch it as a cold, then it would become bronchitis, then it would morph into
pneumonia. My boss grew weary of my sick days as did I. Then, I would drag
myself to work many times, very sick. Even with MAC infection for fear of being
fired. I finally had to throw in the towel. - Terri M.
 

@jentaylor
I am noticing a lot of people on our forum were nurses. Have you noticed
that?
 

@jentaylor Jen,
there was a booth at the convention this past Spring that was demonstrating the
vests. They are mainly used by CF patients. My Dr mentioned it to me last week
that I might consider getting one. He mentioned that they are super expensive,
but that insurance may cover it. Then he said, but you are sounding pretty good
lately and maybe don't need one yet. He just wanted me to be aware that it
existed in case I ever need it. Hang onto yours in case you ever need it in the
future. Are you sure it wasn't doing anything for you? If you are coughing stuff
up now, the vest helps shake that phlegm loose from the little crevasses down in
your lungs.
 

Haha, who cares if we're old, we've still got the beat!!

Hi Jo Ann, I have gerd also, but I just kept working at it, and now pretty good. I stopped eating bad combinations of food, cut way down on fat (the worst) never eat dinner, and lay on my left side, so the stomach just slips back down into place. Also I sleep on like 3 or 4 pillows. I stopped taking all the meds because they did nothing! I just worked on low fat, and walking after meals. I find that if I nap after a meal it also stops the gerd. It got really bad at first, had to have bronchoscopy, small hiatal hernia. But now it is much better. The biggest improvement is laying on left side. Doc didn't tell me that, another gerd sufferer did!

@windwalker Terri M, that job sounds so interesting & very cool! Thanks for "getting" it.

@windwalker I have noticed that there are a lot of nurses (along with a lot of people with RA)... hmmm... maybe already poor immune systems then picked up bugs here & there from patients?? Freaquent infections damaged the bronchials which made them more susceptible to capturing MAC in our sticky breeding ground/lungs. It doesn't really add up though since you can't catch MAC from another person, so not from the parents... it's puzzling... but very interesting... good observation!

I worked in the Infectious Disease unit in inner city Baltimore at University of Maryland for a traveling nurse assignment. Always wondered if I "caught" something while there...but it doesn't really make sense, so I probably didn't. I also did nursing in Kenya in VERY primitive, remote settings. I, along with dr's, wonder if I possibly picked something up there that we don't really look for or recognize here in the US. But it's unlikely...ID dr doubts it. ~Jen

@windwalker That's a good idea Terri.., it doesn't hurt to get it out & try it again! I think I will try it tomorrow & see what happens! Thanks for the idea!

@contentandwell JK, I too have GERD & Barretts Esophagus. I have annual endoscopys to keep a close eye on it. I take Nexium in the morning & Zantac at night. This helps. I gave up coffee along with some fruits. I LOVE PICKLES & often have a few at bedtime or when I can not sleep. It turns out, that the pickle juice is a natural acid reducer even though it would seem like the opposite would be true! I have blocks under the bed too to help with my breathing & GERD. I would love to someday have an adjustable bed but I don't see that happening anytime soon! Best, Jen 🙂

@jentaylor Jen, interesting about the pickle juice. I avoid pickles because they are high in sodium. Do all types of pickles help? It sounds as if you must have ongoing discomfort from the Barrett's, do you? If so what? I had hoarseness which led to my endoscopy but there are no other symptoms. These days I take 40 mg of omeprazole in the morning. It was doubled after my transplant to combat some of the effects of the post-transplant drugs I have to take. I believe it will be reduced back to where it was at the one year "tranniversary". I am hoping for that because from what I have read long term use of PPIs is not good for you.
In cirrhosis you can get "varices" in your esophagus so I wonder/hope it will turn out that I didn't actually have Barrett's, which reminds it might be time to schedule another endoscopy. I will be looking forward to the results of that. I have been told that is not possible, but I still hope.
JK