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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine
SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"
Replies to "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..."
When I had pseudomonas in April 2016, I was treated with IV Cefipime for 21 days
@windwalker, I am not going to stay with my current pulmonologist or infectious disease student. Ive had so many things pulling me in different directions that its been hard to get back to the search again. Every new doctor means new forms to fill out and records to be sent. I need to contact my
@jentaylor, Jen, could you expand upon that .. 2 x per day .. where/how? Thanks! Katherine
@windwalker and others who have been on tobramycin. Is that the Toby podhaler? If so my insuance will not cover it because I don't have CF. They claim it is not approved for non CF bronchiectasis. I went through an appeal last year and lost. Now im in the middle of appealing my pain medicine. Ive been on it for 6 years and next month they will stop paying for it. Thanks for all the good information.
Becky
@chinasmom, Becky, I have Blue Cross Senior Gold insurance and they are covering the inhaled Tobramycin 100% for Pseudomonas .. I would fight them! Insurance companies deny until you fight .. usually until the 3rd or 4th round! Don't give up! Hugs! Katherine
@chinasmom Becky, I have really good Highmark Blue Cross/ Blue Shield through Penn State & they still denied it (neb. Toby) for me even after my doctor challenged it & had a peer to peer review (I think that's what they called it??), & based on the grounds that I don't have a CF diagnosis. The doctors office then gave me a 2 week supply that they had from a previous patient who didn't use it. I don't think it was long enough though. Others on Connect are getting it though, so I guess you just have to keep on fighting! Good luck! ~Jen
@chinasmom, Becky, how in the world are they justifying not paying for your pain meds!?!?!?! I'm a huge advocate for adequate, proper pain management, without judgment & I find it absolutely appalling that the insurance companies can possibly make the decisions on whether to cover something the doctor has deemed necessary!!! Or further more that many physician are refusing to even continue prescribing pain meds under present, persistent scrutiny!!!!!! Ridiculous!!! I am so sorry to hear that...I know pain meds can be very pricey!!! I hope something gets worked out!!! Proper pain management is a basic right that everyone should be afforded! ~Jen
@jentaylor, Jen and @chinasmom Becky .. COULD IT POSSIBLY BE my Tobramycin is being paid 100% because it was prescribed by a Mayo doctor .. AND being shipped out to me by the Mayo Pharmacy at Rochester MN?? That just doesn't seem possible .. BUT it ALSO seems weird that I am the ONLY one being paid for!! Hmmm. Hugs! Katherine
@katemn, Katherine & @chinasmom, Becky, Yeah, I just don't quite understand! It doesn't seem to make any sense!!?!??~Jen
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My pseudomonas was treated with tobramycin. It has worked; for those of you
where cipro has failed.