← Return to (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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@katemn

@justjanet
Hi Janet,
Let’s communicate on the Forum .. this is REALLY good information to share with ALL! You did SUCH a good job! Do you mind if I put it on the Forum?

I found out about googling the bios of doctors the hard way because of my husband’s health. He has leukemia .. a blood cancer .. AND I found out the hard way that we had been referred to an Oncologist who was a Specialist in COLON CANCER!! I was SO angry!! Did not even discover it until we were spending winters in a warmer climate AND I then realized I needed to do MORE “Due Diligence” and started my googling doctor bios .. and I found an Oncologist who SPECIALIZED in leukemia! Who then put my husband on a newly FDA approved chemotherapy .. my husband is alive today due to that man as far as I am concerned!

“Due Diligence” does the job as you have well found out! Good for you! I am so happy for you that you found the very best Center for Bronchiectasis Care and they treat NTM .. PLUS it is covered by your insurance! Sorry .. I do NOT consider it “luck” for you! You absolutely deserve this! You have worked so hard with your Plan A .. Plan B .. Plan C. You’ve done such a good job with your research and planning!

Now I would suggest you gather up ALL the records you can find .. doctor office notes .. Xray .. MRI .. Ultra sounds etc. ANYTHING that you can think of .. get it organized. A lot of doctor offices and hospitals will put you off .. my solution is to get a date and tell them I WILL pick it up personally!! That way I can sign whatever legal document necessary PLUS it gives them a deadline and I know I will have them for the appointment. THEN .. do NOT give up your copies. Make these copies your PERSONAL copies for future reference as needed. Make sure any NEW doctor makes COPIES of YOUR copies! I know in my home state doctor offices are only legally required to keep medical records for seven years. So it is important with our diseases to have our own records to show the disease history and progression. Then write down a detailed list of questions for your new doctor. If you google it you will find many doctor question lists. Personally I cut and paste many of the various question lists and came up with my own.

After that? Just let go! Know that you need to “Put your energy into what you can control .. and let go of what you can’t control!” You have already put your energy into doing your “Due Diligence” .. now you just need to be serene about the outcome .. you can’t control the outcome. Just keep us posted here on the Forum .. know we are here for you! Sending you a hug! Katherine

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Replies to "@justjanet Hi Janet, Let's communicate on the Forum .. this is REALLY good information to share..."

Sorry Katherine! Just hit reply and thought I was on the forum then or not paying enough attention. Not the brightest bulb on the planet. 🙂 Thanks for all the tips. I will definitely use them.
Have a great day-
Janet

Janet, keep us posted! You are doing such a great job! Sending you a Hug! Katherine

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