Specialist in New England

@irene5 Dear Irene
Did you ever visit NJH? Your UMASS team sounds wonderful. How did you cure your MAC and do you have bronchiestasis?

@tufty Hi@tufty. I never did go to NJH. It was a real possibility and thought in the beginning. It was discussed because MAC was heard of but “fixing” me needed tweaking because I was fragile. They say frail now. Tsk! Tsk! I also did not go to NJH because after teaching for 43 years, I wanted to just be near home for medical things because I still had 6 Chinese kids living with my husband and me, and he suffered from Sarcoid, diabetes, and later dementia so I would have felt guilty going there. ( such a Catholic thing) . I became Dr. Wessolossky’s first patient to use Arikayce. I was her Guinea pig she said. Moreover, at the time she was the ID doctor at our local hospital as well as at UMASS so traveling involved under an hour each way. It just all made sense. The Big 3 did not cure the MAC so that’s why I started the Arikayce which cured the MAC . However it damaged my lungs so I had some complications after a robotic surgery. C’est la guerre! I also have bronchiectasis which is not getting better because it just doesn’t so I take Levoquin 2 times a week and nebulize up to 4 times a day with medicine. The hope is to keep other pathogens out of a delightful environment for them to live and grow. I started this journey at age 65 and will be 76 on Easter. I am ever so grateful to the doctors at UMASS Memorial and UMASS University Hospital. They recently got me through a long stint with MRSA pneumonia. I guess @tufty I like the close proximity of my medical team. For me that kind of relationship is best. Good luck to you. (Irene)

Hi Irene, sorry to hear all that you have going on. It sounds like you have a good group at UMASS!
I have been seen at MGH for approximately 2 years and have not been happy with the care there. I’m in the process of moving to Tufts Medical Center as they have a great group there in there Clinic.
Best of luck 🤞

@dstella Good for you!! What I have learned over time is that we have to advocate for ourselves and listen to our body and its infinite wisdom. I think Tufts is a great choice! I don’t know much about their lung/ID doctors but they were phenomenal with our son Yu Xia who was born with clef lip and palate. I think you made a good choice. And thank you! One day at a time and a whole lot of prayer :). Best of luck to you. (irene)