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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don't know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others' experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!
Happy New Year 2017 to us all! Kathryn
Replies to "I, too, have a cavitary nodule in my right upper lobe but it has decreased in..."
@melrosedecosmo, Rosie .. these are the notes I have made on finding a good doctor .. good luck! Hugs! Katherine
INFECTIOUS DISEASE DOCTTOR
1.GOOD Infectious Disease doctor locally. Just google it
2. call the various offices .. ask to speak to a nurse .. ask 'How many MAC patients has your doctor seen in the past 12 months?' If a NURSE in the office does not even KNOW what MAC is .. that is a pretty good tip off that office does NOT treat MAC patients!
3. Request an appointment with the BEST ID doctor locally you can find
4. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
5. Having read ALL the back pages of this Forum .. done your 'due diligence' .. educating yourself .. you will NOW have a LONG page of questions and will KNOW exactly WHAT the ID doctor SHOULD be doing for you .. or NOT doing
in terms of the any other doctor: after googling the specialty .. I check their bios by googling their name ..
1. check their education. Then choose the one who has gotten into the BEST schools .. figuring IF they got into those schools they must be pretty bright.
2. choose one young enough to have the newer knowledge BUT old enough to have
enough hands on experience that they have a 'mental file cabinet' to draw on to evaluate you
<br><br><br><br><br>Good luck with your search. Please let us know what you find out. (I'd <br>still drive down to Mayo in JAX, they are pretty wonderful down there).<br> <br><br>
<br><br><br><br><br>I will be going out on a limb here by saying this, but I feel compelled to. <br>I have lost precious lung function over the years by seeing 'the best <br>pulmonologists in the city', of any city I have lived in. This is lost <br>lung function I will never regain. I have found that many drs (with great <br>references) are not really staying current, nor have the time for delving <br>into specifics. Lungs are the most delicate organs you have, I would not trust <br>them to just anybody. Only go to highly reputable medical centers that are <br>cutting edge. i.e. Mayo, NIH, John Hopkins, to name a few on the east coast. - I <br>sincerely hope I did not offend anybody. I know there are good drs out there, <br>but they are hit or miss in the 'for profit' segment.<br> <br> <br><br>
Windwalker...A plug for Denver National Jewish Health ! Terrid
RE: Pharmacogenetics or PGx
In response to Julie's (@jewel8888) mention of "DNA testing for best medication and susceptibility".
Julie is referring to drug-gene testing, which is also called pharmacogenomics, or pharmacogenetics. All terms characterize the study of how your genes affect your body’s response to medications. The word “pharmacogenomics” is combined from the words pharmacology (the study of the uses and effects of medications) and genomics (the study of genes and their functions). You can read more about it here: http://mayocl.in/1FygJlM and here: http://mayocl.in/2dxcniz
@dawn_giacabazi, one of our volunteer patient Mentors, and @kdubois speak about pharmacogenetics on Connect. You may wish to read their experiences here: http://mayocl.in/2j8LEhw and here: http://mayocl.in/2jBwfHy
@jewel8888 I had Pharmacogenomic testing done at Mayo - Rochester last March. These tests actually saved my life as we learned that I had been prescribed medications that I don't properly-metabolize for 12+ years because I have many polymorphisms. Please let me know if you have any questions.
Im so glad you had the testing, it does make a huge difference for us. I appreciate Colleen describing it better than i could!
Thanks I am going to ask my doc about having these tests done.
@windwalker, Terri, I am just catching up with posts .. ignore any that are redundant! I SOOOO agree with you! Before I learned to do my 'due diligence' I later found out my husband Oncologist that we had been referred to (somebodies' buddy?) was NOT even a leukemia/blood oncologist .. he was a COLON CANCER specialist. My husband had been going to him for years before I got sick with MAC and learned to do my OWN 'due diligence' and THEN found him a proper CLL Oncologist who REALLY got him going on the proper program .. AT A TEACHING University Hospital .. NOT a profit making doctor's office!! I have learned the hard way to seek doctor's young enough to have the newer knowledge .. BUT old enough to have had a few knocks on the head .. EXPERIENCE!
SOOO sad that you had to lose so much lung function to poor doctors .. such a rip! Terri, this is so well said .. and so important .. I have added it to my 'File Cabinet" .. and may quote you in the future. Our lungs are SO important .. and we just can't mess around with them! Sending you a hug!! Katherine
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I am moving to Columbia. Trying to find out the quality of pulmonary and gastro specialists.