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1 day ago · Negative sputum results without treatment in MAC & Bronchiectasis

Hi Kayekuz, do you take the albuterol as a neb solution or an inhalant? Do you take it before, or after the saline or, If a solution, do you mix it with the saline? My lungs will not tolerate saline even the 3%. I, and my doctor, would like me to use it but, at least until I finish with Arikayce which also "upsets" my lungs, I can't do the saline. I'm interested in whether Albuterol would help.

Fri, Nov 29 6:59am · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

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

Thu, Nov 28 12:11pm · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

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

Sat, Nov 9 1:13pm · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

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. 🙁

Fri, Nov 8 6:46am · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

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!

Fri, Nov 8 6:43am · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

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.

Thu, Nov 7 7:04pm · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

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.

Wed, Nov 6 9:02am · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

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.