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My bronchiectasis specialist is leaving!
MAC & Bronchiectasis | Last Active: Nov 29, 2019 | Replies (25)Comment receiving replies
Hi Terry. Thank you. I would like to think this could go away in its own, but It seems to involve all lung lobes but upper left, and there is cavitation in middle right. I think the follow up scan is just to make sure it’s “just” mac. A year and a half ago, I had a medical exam for work (USDA veterinary services) about 18 mo ago. It showed patchy opacities in right middle lobe. I was unable to get anyone to take it seriously (GP) since they never saw the one done by the gov, and their recheck rads only showed scar tissue. So...shortness of breath progressed, some pain on the right, fatigue, crackles when in reclining position, couldn’t breath good when lying in right side, and finally a cough when reclining that was so bad I asked for a referral. Then the pulmonologist told me I was referred to told me that was all in my mind, and that it was just asthma. But we were going to do a scan anyway. She was surprised I think. Did the scope and never saw me again. Health department snagged me for 10 day quarantine, then saw pulmonary NP for follow up. They have referred me to Infectious disease because they don’t treat this. I’m going to go, but only to hear what he has to say, and likely either get referred to a pulmonary who treats this or refer myself to Tyler, Tulane, or Mayo. I could drive to Tyler or Tulane. Do you know if anyone has had experience with Tulane? I feel like I’m in “doctor jail”. Oddly, I’ve worked with back yard chickens regularly over the last four years. Coincidence? Lots to get off my chest:-) Thanks for asking:-)!
Replies to "Hi Terry. Thank you. I would like to think this could go away in its own,..."
Hi Sam
I'm the Chicagoan who is losing my bronchiectasis/ntm specialist to UT at Tyler sometime in the next few months. Terri mentioned me. There are very few pulmonologists who specialize in our rare diseases and most patients appear to be seen by a general pulmonologist AND an infectious disease doc. Pulmonary centers that have experience with the most patients like us are at National Jewish in Denver, UT in Tyler and Mayo. Other places have some patients but I believe that these are the ones seeing the most patients, having labs devoted to our organisms and doing the most research. Lucky you to be driving distance from Tyler. If I were you I would set up an appointment there asap.
Happy turkey day!
Rita
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@sam33 Hi. Is your name Sam? I have a similar diagnosis as you. My middle right lobe is now beyond cavitary, it is now a big dead spot. I too saw many drs over the years who just didn't have a clue as to why I was so sick in my lungs. So, I understand your frustration. I was told I had asthma and pneumonia all of the time. I finally got to the Mayo in 2013 and they literally saved my life. I was a big old mess. I was on the verge of needing a double lung transplant. Fortunately, the treatment plan I was put on knocked the mac down to an undetectable level and stopped the progression of lung damage. I am doing amazingly well these days although very short of breath. I looked up both Tyler and Tulane. Tulane's pulmonary dept did not list anyone there that specializes in bronchiectasis or mac, nor critical care. It seemed like it offered only basic lung care. I could be wrong on that. Tyler looked very good. In fact one of our members is losing her great doctor to them. Her dr is leaving the Chicago area to work at Tyler. If you are willing to travel, Mayo Clinic in Jacksonville is wonderful. Now, you mentioned working around chickens the last four yrs...we have a group member with chronic mac who has had chickens for yrs. in her back yard. There can be a correlation to getting serious lung diseases from chickens. You can Google the question and find some sites to tell you more about that. Are you coughing a lot right now?