1. < MAC & Bronchiectasis

My bronchiectasis specialist is leaving!

Posted by rits @rits, Nov 5, 2019

After recently reporting that my dr was the second speaker at the recent National Jewish symposium and telling you how much I like her, she called this morning and told me that she is leaving the U of Chicago and going to Tyler, Texas. I am distraught!!!! How can she do this to me? Texas is REALLY far from Chicago!

I believe that some of you are being treated at National Jewish or Mayo but live far away. I will have a local pulmonologist but I hope Dr McShane will continue to treat my bronchiectasis and any little bugs that show up in my diseased lungs. How does that work?

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rits | @rits | Nov 28, 2019
In reply to @sam33 "Hi Terry. Thank you. I would like to think this could go away in its own,..." + (show)
@sam33

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:-)!

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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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1 reply
sam33 | @sam33 | Nov 28, 2019
In reply to @rits "Hi Sam I'm the Chicagoan who is losing my bronchiectasis/ntm specialist to UT at Tyler sometime..." + (show)
@rits

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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Thank you so much for your response. This referral business is crazy. They get you in their system and it’s like trying to stop a freight train! I’m seeing an infectious disease doc Monday just because it’s easier to go than try to change the referral. I don’t believe you need one at Tyler, and as soon as The results of my New Year’s Eve scan Are in, I plan to set something up. People act as if this is no big deal, but To me, it’s a very big deal, and life changing. I’m sorry you are losing your doc. That relationship is worth everything. I do know that the more information we share, the better equipped we are to deal with our own dis-ease. I’m so appreciative to you and all those who are willing to share. Lots to be thankful for❤️.
Thank you again, and Happy Thanksgiving to you as well!
Sandy

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tdrell | @tdrell | Nov 28, 2019
In reply to @colleenyoung "@rits, I can imagine that you feel like the bottom just fell out. It is hard..." + (show)
@colleenyoung

@rits, I can imagine that you feel like the bottom just fell out. It is hard to lose a trusted specialist, especially when there are so few MAC expert around. @windwalker can relate. She also had to change specialists, I believe due to retirement. I'm also tagging a few other member, who I think might travel to get MAC care, like @macjane @auntnanny @irene5 @jkiemen @tdrell @ling123.

@rits, will you need to travel to Texas to become a patient at Tyler? Do they have a patient portal?

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@rits....I live in Wisconsin and went to NJH in Denver 3 years ago for second opinion. I still have pulmonologist locally for the sleep apnea confirmed at NJH and routine bronchitis that occurs. I went thru the 10 day battery of tests at NJH and was told I did not require NTM medications ( which local ID Dr was ready to start]. I went back once a year to NJH for follow up....usually takes half a day....last year was told next appt in 18 months. I would check out weather in Texas.....all 3 times in January I had blizzards and ice on roads in Denver. You would have advantage that Dr McShane knows you and your clinical situation. Another thought I have....navigating the physical building in Texas....I was from Chicago and visited near the Un of Chicago Hospitals....if you navigated that.....you can navigate ANYWhere....Terri from @tdrell

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1 reply
rits | @rits | Nov 29, 2019
In reply to @tdrell "@rits....I live in Wisconsin and went to NJH in Denver 3 years ago for second opinion...." + (show)
@tdrell

@rits....I live in Wisconsin and went to NJH in Denver 3 years ago for second opinion. I still have pulmonologist locally for the sleep apnea confirmed at NJH and routine bronchitis that occurs. I went thru the 10 day battery of tests at NJH and was told I did not require NTM medications ( which local ID Dr was ready to start]. I went back once a year to NJH for follow up....usually takes half a day....last year was told next appt in 18 months. I would check out weather in Texas.....all 3 times in January I had blizzards and ice on roads in Denver. You would have advantage that Dr McShane knows you and your clinical situation. Another thought I have....navigating the physical building in Texas....I was from Chicago and visited near the Un of Chicago Hospitals....if you navigated that.....you can navigate ANYWhere....Terri from @tdrell

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Thanks @ tdrell. I plan to continue with Dr Mcshane somehow and hope that I don't need to go to Tyler often. I will see a U of C pulmonologist regularly. One if her specialties is bronchiectasis but she referred me to Mcshane when my sputum came up positive for MAC. All of my other doctors are at Northwestern and I was so unfamiliar with U of C that I waited a really long time to change pulmonologists although Northwestern does not have a bronchiectasis specialist. However, it really is easy because the doctor's building has valet parking. One visit when I had a ct scan in the hospital building which connects through a really REALLY long bridge, staff arranged for me to be transported by wheelchair. Easy peasy! Rita

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 29, 2019

I just read patient reviews for UT Tyler Hospital, the pulmonary dept in particular. Many patients complained of overbooking and having to wait an extra ordinate amount of time to be seen. One 80 yr old said she waited two hours. I saw only one favorable about having only a 5 min. wait. One patient said they were there, nurse took vitals, got an x-ray, but never saw the dr. because they were over-booked. If you are a traveling patient, I would go with Mayo in Jacksonville instead. They are run like a well oiled machine and have the best medical teams.

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