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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..."
Wow! That is wild about getting NTM in the vaginal area! Never heard of that before. I did know that about surgical equipment, and I hope they are doing something about it in ALL hospitals. Also, want to make note that the water pic device that the dentists use to rinse your mouth; has the highest levels of MAC in it. Most dentists have changed over to suction, but even then, they sometimes ask if you want to rinse. Say no!
Terri - I start filling my tub and put some nice smelling bubble bath in it, and let it fill while I pick out my clothes for the day or brush my teeth. By the time I'm done, the tub is full. I don't take any more time in the tub than I would in the shower. Once in a while, it does feel good to take a minute and just lay in the water, but most times I'm in and out. I pull the plug then go get dressed and do hair and makeup. By then the tub is drained so I rinse it out and off I go! No wasted time or extra time taken vs shower. And I feel that I've eliminated one large risk factor for MAC. Linda
Terri, I just wanted you to know that I am so glad that you like to research things and share. It broadens our horizons and keeps us interested in staying focused on our disease for better care. Big Thank You!
Not that it matters at this point, but my family is 110% convinced that is how I got MAC. I have had more dental work "than the average bear" which ended ultimately in a mouth of implants. I had had root canals on every tooth I owned and two permanent bridges and a bottom partial! I am sure I funded a couple of dentist and oral surgeons new homes! If I was predisposed for MAC it was probably from all that airolized water and the emotional stress of all of it!
Hi Linda, I too have resorted to taking a bath now verses a shower. When I made the statement about being too impatient to wait for the tub to fill or drain, it was in reference to someone else's post about the tubs where you open a door in the tub, get in, shut door, sit and wait for deep tub to fill with water.
Yikes! I wanted to put that out there about dentist water because when we know better, we do better.
How do all of you who bathe shampoo your hair? Any tips would be appreciated. Terry
Terry, I put my head in the kitchen sink and wash with the faucet. I don't use a sprayer. Linda M
Irene5 my cough and mucus ..that lasted 2 years and still lingers on....started the day after I had my dental implant put in. Tdrell
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I do not need help getting in or out of a bathtub at this time; but, I don't know that I would have the patience to sit and wait for it to fill, and then when done, drain out.