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?

Is there a large hospital in Tyler Texas?

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My pcp is very close to me. However, we do most of our communicating via text or phone. He has a concierge practice and, for me, it is worth every penny I pay. I send him pictures of whatever it may be that is bothering me or I just describe it. He determines if he needs to see me or if he can take care of me without my having to make a face to face appointment. Maybe the doctor who is moving would welcome a digital relationship with you. Best wishes!

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@tinaesims

Is there a large hospital in Tyler Texas?

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Good question. Several people have posted on various forums that they are being treated at Tyler for MAC. Dr told me it was a pulmonary center.

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@esssbeee

My pcp is very close to me. However, we do most of our communicating via text or phone. He has a concierge practice and, for me, it is worth every penny I pay. I send him pictures of whatever it may be that is bothering me or I just describe it. He determines if he needs to see me or if he can take care of me without my having to make a face to face appointment. Maybe the doctor who is moving would welcome a digital relationship with you. Best wishes!

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She told me that she is looking into how she can continue to care for me from there. I will have a pulmonologist here to listen to my lungs on a regular basis, order tests when necessary and collect sputum samples. They will work together to treat me. I'm curious with respect to how often people with a long distance relationship with a dr at Mayo or NJ have to travel to see the doc. I have another health problem which makes flying tricky. Not impossible but difficult.

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@rits

Good question. Several people have posted on various forums that they are being treated at Tyler for MAC. Dr told me it was a pulmonary center.

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Dr Griffith is there and he is excellent w/NTM I am told

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Thanks Judy. There is no Dr Griffith listed as a physician at U of Chicago except for a radiologist. A ID at Loyola was recommended to me but I'm going to see how it goes with a local pulmonologist and a long distance relationship with Dr Mcshane. I was curious with respect to how it works for those who currently live far away from their treating physician.

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@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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colleenyoung and rits My pulmonologist is in Rochester Mn (10 hours from here). I have some MAC, but he has chosen thus far to not treat. He feels if we can rid the pseudomonas that perhaps the MAC will not cause any trouble. I've been on tobramycin for 8 months and more recently cipro for 14 days — which I finish tomorrow. As I'm writing this, my cough has lessened considerably in the past 3 days but I'm just hoping it isn't a short break and will return soon. It's been a hard session. In February my sputum tests came back with "many" MAC — after being on toby for 7 months did another test and it came back "few MAC"….. so I'm feeling perhaps the pseudomonas is the bigger problem right now. So hoping I can avoid the Big Three. I'll be anxious to know how you feel about your next specialist —– I'm going to see one closer to me in about a month. Not giving up the one in Rochester (Mayo's) but hoping to find someone a little closer in case of emergency. I oftentimes feel like I need some encouragement but am sure many others feel the same. Let us know how you do.

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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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Thanks Colleen! I'm not familiar at all with Tyler but I'm sure they have mychart or another patient contact venue. I will know more when I see Dr Mcshane in January. She said she is going to figure out how it will work long distance. Luckily she has a close working relationship with my general pulmonologist at U of Chicago.

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@auntnanny

colleenyoung and rits My pulmonologist is in Rochester Mn (10 hours from here). I have some MAC, but he has chosen thus far to not treat. He feels if we can rid the pseudomonas that perhaps the MAC will not cause any trouble. I've been on tobramycin for 8 months and more recently cipro for 14 days — which I finish tomorrow. As I'm writing this, my cough has lessened considerably in the past 3 days but I'm just hoping it isn't a short break and will return soon. It's been a hard session. In February my sputum tests came back with "many" MAC — after being on toby for 7 months did another test and it came back "few MAC"….. so I'm feeling perhaps the pseudomonas is the bigger problem right now. So hoping I can avoid the Big Three. I'll be anxious to know how you feel about your next specialist —– I'm going to see one closer to me in about a month. Not giving up the one in Rochester (Mayo's) but hoping to find someone a little closer in case of emergency. I oftentimes feel like I need some encouragement but am sure many others feel the same. Let us know how you do.

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Thanks annie. Dr Mcshane is very optimistic and has often told me to call her if I'm feeling low for encouragement. She is very special and I wish she were going to Mayo which is about 8 hours from here by car. Certainly doable! Flying to Texas. Arggggg!

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@judyhodgern

Dr Griffith is there and he is excellent w/NTM I am told

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I apologize Judy. You meant that Griffin is at U Texas. I did some research and understand better why she chose Tyler. It is a University town and as such, she will be able to do the research she loves along with other doctors who specialize in NTM. I know she wants to find a definitive cause for bronchiectasis as well as antibiotics that work for just about everyone. There are few doctors with those specialties here but she can work along side of Griffin and other top notch doctors in that area at Tyler. Also I would imagine that, because it is a center for NTM disease, UT gets more grants and drug company money for research in the area of medicine she loves. Because of Skype, etc I think long distance treatment is possible but the matter of billing remains. I'm resigned that I will need to go to Tyler to see her at least once a year in order for insurance to cover her treatment. 🙁

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@auntnanny

colleenyoung and rits My pulmonologist is in Rochester Mn (10 hours from here). I have some MAC, but he has chosen thus far to not treat. He feels if we can rid the pseudomonas that perhaps the MAC will not cause any trouble. I've been on tobramycin for 8 months and more recently cipro for 14 days — which I finish tomorrow. As I'm writing this, my cough has lessened considerably in the past 3 days but I'm just hoping it isn't a short break and will return soon. It's been a hard session. In February my sputum tests came back with "many" MAC — after being on toby for 7 months did another test and it came back "few MAC"….. so I'm feeling perhaps the pseudomonas is the bigger problem right now. So hoping I can avoid the Big Three. I'll be anxious to know how you feel about your next specialist —– I'm going to see one closer to me in about a month. Not giving up the one in Rochester (Mayo's) but hoping to find someone a little closer in case of emergency. I oftentimes feel like I need some encouragement but am sure many others feel the same. Let us know how you do.

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@auntnanny, Hi Jan! Just a heads up, tobramycin will sometimes kill both pseudo and mac. Are you still doing your inhaled saline treatments?

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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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