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?

windwalker yes, I couldn't do the 4-week on/off so they put me on 2 weeks on/off. More than that gives me serious breathing problems. But I plan to stay with it a while longer. I started in March and can see no improvement in either MAC or pseudomonas. Perhaps I need more time. Yes, I do albuterol followed by saline (and then toby when I'm on it). So wish I could see improvement. I also just finished 14 days of cipro 1000 mg daily…… don't see any results from that either. Kind of discouraged, Terri. Jan

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Hello all…I’ve just gone through the “quarantine” and dx with mac. Waiting on a repeat scan at three months, as my previous scan is quite busy, and we need to see if it’s stable and “just” Mac, uncomplicated by “something else” The pulmonary group I saw for this is in Jackson, MS. But they do not treat Mac, and have referred me to an infectious disease group that I imagine sees very little. I have read about Tyler, and, though I’m sorry I’m reading that an excellent doctor is leaving Chicago to go there, I’m happy to know there are specialists less than 8 hrs from me. As I’m waiting for the next scan, I’m doing some integrative things, and will be able to tell if they are helping. If so, I’ll post about it. It appears this will not be a simple path, but I’m happy to know there are others from whom I can learn and with whom I can share. Btw, I’m in Pontotoc, MS, and am a veterinarian, and am extremely frustrated by doc’s so far…but hope that will change:-) Good luck to all…

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@auntnanny

windwalker yes, I couldn't do the 4-week on/off so they put me on 2 weeks on/off. More than that gives me serious breathing problems. But I plan to stay with it a while longer. I started in March and can see no improvement in either MAC or pseudomonas. Perhaps I need more time. Yes, I do albuterol followed by saline (and then toby when I'm on it). So wish I could see improvement. I also just finished 14 days of cipro 1000 mg daily…… don't see any results from that either. Kind of discouraged, Terri. Jan

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@auntnanny Hello Jan. I apologize for not getting back to you sooner. I have been dog/house sitting for three families consecutively for the last three weeks, and been out of my routine. I am sorry that you are feeling discouraged. This is a fickle infection to battle. Most of the treatment plans end up being a three year thing before people test negative. So, hang in there, and if need be; try diff meds up the road. I know you have been at this battle a long while already & it gets old. You have to go on, and also do self mental checks. Give yourself wellness pep talks. Tell that mac you will NOT have it anymore! Sending you cyber hugs.

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@sam33 Hi there. I am glad that you have joined our discussions. Are you able to navigate around our group site alright? Have you seen our 'Discussion Board' with a list of topics? There is a lot of helpful info there. Please let me know if you need help with any of that. Also, if you don't mind, keep me posted on how your next scan goes. Sometimes mac goes away on it's own or will just lay way low. I am hoping you get a good report. What brought your dx to light? Were you having symptoms?

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@auntnanny

windwalker yes, I couldn't do the 4-week on/off so they put me on 2 weeks on/off. More than that gives me serious breathing problems. But I plan to stay with it a while longer. I started in March and can see no improvement in either MAC or pseudomonas. Perhaps I need more time. Yes, I do albuterol followed by saline (and then toby when I'm on it). So wish I could see improvement. I also just finished 14 days of cipro 1000 mg daily…… don't see any results from that either. Kind of discouraged, Terri. Jan

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Hi Aunt Nanny…when I tried Tobi for my psedo, it wasn’t as effective as the Colistin…I take 150mg every other month….knocks it back to very lite….after 4 weeks or so back to medium…go on Colistin again for 4 weeks, and so goes my cycle…have been doing this for a few months…feel great💕

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@windwalker

@sam33 Hi there. I am glad that you have joined our discussions. Are you able to navigate around our group site alright? Have you seen our 'Discussion Board' with a list of topics? There is a lot of helpful info there. Please let me know if you need help with any of that. Also, if you don't mind, keep me posted on how your next scan goes. Sometimes mac goes away on it's own or will just lay way low. I am hoping you get a good report. What brought your dx to light? Were you having symptoms?

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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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@megan123

Hi Aunt Nanny…when I tried Tobi for my psedo, it wasn’t as effective as the Colistin…I take 150mg every other month….knocks it back to very lite….after 4 weeks or so back to medium…go on Colistin again for 4 weeks, and so goes my cycle…have been doing this for a few months…feel great💕

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Although I am extremely lucky to not have had to battle MAC or pseudos yet, the approach you have described sounds more unique than I’ve heard from many others…..it sounds like it’s been very effective for you! Congratulations and continue to feel well!

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@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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@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?

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@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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@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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@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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@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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