Teresa, hmmm .. what a journey you have been on! I am SO glad you are getting a second opinion. For me .. if for no other reason it gives a peace of mind .. plus it just may add to your storehouse of knowledge .. every little tidbit helps in the decision making process. I have found that picking the "right" doctor is just essential in the journey .. not just in the actual procedure but also in the recovery process. If you have a caring doctor that you have confidence in .. makes the whole thing SO much easier!

In the medical journey I have been on with both myself and my husband .. I have seen both sides. A genius doctor that my husband saw that invented a certain procedure that I felt was an absolute JERK .. and I could hardly stand to be in the same room with him .. to a WONDERFUL oncologist for my husband that we think the world of! Plus of course my own Pulmonologist that is the warmest .. loveliest doctor I could ever have asked for on my MAC/MAI journey. That said .. I am confident you will choose wisely not only for skill but someone you feel comfortable with who will answer whatever questions or concerns you have .. UNTIL YOU are comfortable with what the future holds!

I was just thinking .. since I have not had surgery .. I have not kept the information in my head .. but I know I have read various things on ways/methods/things that help recover better from surgery. Why not do some googling in advance and figure out some things that might help you .. I just did just one thing and came up with: http://www.surgerysupplements.com/how-to-enhance-post-surgery-recovery/
.. I'm not saying this one is good or bad. Just that there might be ways for you to prepare yourself mentally and physically for a surgery.

SO glad you let me know how you are doing .. please keep me posted on what is going on. Plus it would be helpful to others if you find some things that are helpful to you in your journey preparing for your surgery. We are all in this together! Hugs to you! Katherine

Hi Lisa, good to hear from you! You are being SO pro active in your having your doctors consulting with each other .. that is SO great! Since you are doing this excellent idea .. if I was in your shoes .. I would just sit back and rely on their judgment. In my understanding .. decisions on MAC/MAI is like putting together a big puzzle. Basing it on the CT scans/Xrays/breathing tests .. all those kinds of things .. PLUS just plain asking you how you feel. Since you are feeling great plus doing such a good job of working out .. I'd just go with the flow .. attitude of gratitude that you are at the point you are!

Now to the shower .. COMPLICATED!! I hate to even say anything because it is so controversial. Dr. Aksamit said they just don't know .. a couple can take showers in the same showers for 20 years .. one gets MAC .. the other doesn't. So WHO knows! So I can ONLY speak for myself .. I have just now made the decision .. COSTLY .. that after a great deal of research I am going to invest in a monthly disposable shower head: Kleenpak™ Disposable Shower Head Filter .. http://www.pall.com/main/consumer-water/product.page?lid=gu7ucktu

If you decide you are interested despite the monthly cost .. I plan to deduct the cost on my tax return as a medical expense. If I am audited I will get a note from my Pulmonologist .. if it becomes an issue .. I at least feel I am trying to do my 'due diligence". Who knows if it will do any good or not .. even the doctors do not know for sure just how mycobacterium gets in our lungs! Here goes .. not in any definite pattern .. just notes from MANY emails with Christopher the Manager who I spoke to/emailed with who has to approve setting up the account before shipments can be made.

*we will ship only the (2) ea. KAQF42

*I give all homecare patients $60 ea. for shower filter. The list price is $96.20 ea. for KAQF42.

*Part#SHO1/2MV quick connect fitting @ $30 ea. (one-time purchase) for shower filter required

*the entire filter is inside the showerhead housing you see in the photos and the entire piece is replaced. The disconnect fitting screws into the end of the shower hose and then you just snap in the filter to the quick connect. No screwing in of the filter as it should just snap in.

*Please also ensure that you do not allow the showerhead/filter hang down on the hose to the floor as it may draw in air inside and cause it to airlock and then water cannot pass through. We did not discuss this on the phone but is also an issue if this happens besides the particulate/sediment in the water. You can use it while showering off of the hook but always hang it back up on the hook when done.

*We also have a Youtube video https://www.youtube.com/watch?v=j5bP3MBPqWk&sns=em that shows this shower filter.

*NOTE: The filter is validated to remove a gram negative bacteria, fungi, and parasites which would include NTM. Many other homecare patients use our product with much success.

*If you would like to set-up an account, please call our customer service at 877-367-7255 and tell them that you would like to be set-up as a homecare customer and you have been speaking to me. They should take down all of your information for set-up. Thanks, Christopher Connolly Manager, Hospital Water Americas +1-973-632-1920 (cell) chris_connolly@pall.com

Lisa, this is just something I am going to give a try to .. not endorsing! Again, thank you for checking in! Hugs to you! Katherine

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UPDATE
I have now been using the above noted shower head for some time. Due to some skin issues I cannot shower daily so do not intend to change the shower head monthly. Am going to watch for a variance in water flow (per a friend's advice .. plus common sense).

I like the water flow .. the handling of handle. I have the European hand held style rather than wall unit .. so it is working quite well .. I am very satisfied that if indeed there is a mycobacterium factor in showering .. I am doing my best in this area!

Janet, so glad you are checking in! AND I can ONLY speak for what Dr. Aksamit told me. When I was first diagnosed .. I was SO worried about being contagious because we have ten grandchildren .. my husband had CLL. Dr. Aksamit told me MAI/MAC was NOT contagious!! Plus now two years ago my husband is on chemo .. AND Dr. Aksamit knows about it .. I feel confident Dr. Aksamit would NOT put my husband in jeopardy .. he would have warned me!

It may not be quickly .. but if you want me to email Dr. Aksamit and ask him yet again for your peace of mind .. just let me know and I will email him. He is VERY busy .. I don't know how quickly I'd get a reply but I'd sure do it! Please have peace about this .. I trust Dr. Aksamit .. don't worry or feel terrible .. I am sending you a BIG hug!! Katherine

Hello Kathryn, tell us how YOU are getting along! Hugs to you! Katherine

Hello Fran, so glad you have your appointment set up .. the waiting game is tough but at least you have them. I think the Infectious Disease doctor will be the most important in my opinion. They should really get the ball rolling .. may well be able to tell you what is going on with some of these symptoms. I know that I use two inhalers .. twice a day for breathing/lung issues. They really help me. It took a lot of trial and error however because so many inhalers caused side effects .. primarily triggering my migraines.

I really have not had the sense of the heart skipping etc .. these are REALLY symptoms you should discuss immediately with your doctor. It helps me to have a list: "Question to Ask the Doctor". You can google this .. I have cut and pasted SEVERAL lists I found online and came up with my own list that feels right to me. I take this written list with me (I have it on my computer and just print it out each time I go) .. and leave spaces between for the answers. That way I have a record of each visit. I find this helpful to go back and read because I can't always remember everything that took place during every visit!

Can anyone else chime in if they have ever had Fran's symptoms? Just hasn't happened to me. Fran be sure to let us know how your appointment go!

By the way, because I feel I probably have a bit of a compromised immune system .. and my husband definitely does .. when we travel I make SURE to take Clorox Cleaning Wipes-12 count packets and wipe down ALL around the airplane. Just google how dirty the airplanes are today .. it will tell you just where to clean! Frankly I did not do this in July .. ended up with a horrid virus and sick for 3 weeks! We also use Halo Oral Antiseptic according to directions .. https://smile.amazon.com/Halo-HL00101-Oral-Antiseptic-Citrus/dp/B009240FPK/ref=sr_1_2_a_it?ie=UTF8&qid=1474326247&sr=8-2&keywords=halo+spray+antiseptic
Do to these two precautions .. have not gotten sick on an airplane .. IF I do both! Just thought I'd share .. hope you have a GREAT time at your step daughter's wedding .. what a fun time! Sending you a hug! Katherine

Janet, I just googled it .. don't you worry anymore!! This is what I found .. it is NOT contagious!! Hugs to you! Katherine

Frequently Asked Questions. A: “Mycobacterium avium intracellulare” (MAI) or “Mycobacterium avium Complex” (MAC) is an atypical NON-TB germ (micro-organism). MAC is related to the tuberculosis germ, but is not contagious and the MAC microbes live in the environment.

Frequently Asked Questions - MAC Lung Disease maclungdisease.org/frequently-asked-questions

Linda, what GREAT news in the lungs area! I would be really interested to hear what your doctor recommends to treat the chronic coughing for your Bronchiectasis .. that is currently the bane of my existence! The constant coughing! I wear a SI belt 24/7 .. for whatever reason that tightness seems to help my lower back pain from all the coughing but other than that I haven't been able to figure out much else! Let us know any tips or treatment they recommend!

Wow .. on the heart issues .. no fun. Keep us posted on what is going on .. we are all here for you! Sending you a hug! Katherine

Paula, you are just too quick! You answered so well .. sorry I duplicated you! I was just going down the line! How are YOU doing? Katherine

Hello apportee (do you have a first name?!) .. you are too funny! I feel the same way about the coughing .. I get embarrassed .. my husband is a saint to put up with it! In fact in July I traveled with a dear friend that had NOT slept with me for years .. I warned her big time because I knew she would be shocked by the coughing .. she WAS!

I had to google the Barium Swallow .. interesting. Let me know what they find out with the Endoscopy. I wonder .. have you been told you have Bronchiectasis .. that is what I attribute my coughing to. Keep us posted. Sending you a hug! Katherine

Thank you so much for your suggestions and for your encouragement, Katherine! The reason I got assertive about my appointments was because of your encouragement before you left on your vacation. So thank you very much. i have an appointment with my GP tomorrow morning and will mention my new symptoms to her while I wait for my other appointments. It is a weird feeling to sense a skipped heartbeat. And today, to top it all off, I woke up with severe vertigo. Every day is an adventure, that's for sure. Hugs back at you!