My bronchiectasis specialist is leaving!
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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Is there a large hospital in Tyler Texas?
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!
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.
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.
Dr Griffith is there and he is excellent w/NTM I am told
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.
@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?
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.
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.
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!