Mayo Clinic Connect
I was recently diagnosed with MAI and live in southeast PA. I want a second opinion and am wondering about maybe Philadelphia? I saw that Penn Medicine has a lung center with a Mycobacterium clinic. Any advice appreciated.
The following physician is an expert in this condition. She was recently in Washington DC at a patient / physician conference for our condition. I saw her speak. I know she is very involved. If you haven’t gone on NTMinfo website, (physician referral) it is a good place to view your options. Penn Lung Center is listed as well.
LEAH LANDE, MD – PULMONARY
Lankenau Medical Center
100 Lancaster Avenue, MOB West, Suite 230
Wynnewood, PA 19096
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Hello Everyone. Just got told I have MAI and would like to know who I should be seeing in the Washington, DC area. Can anyone recommend a doctor or facility?
You could apply to the NIH (Bethesda) to be a part of their study of bronchiectasis and NTM. Several of the best physicians in the country are there. Another very experienced research physician / pulmonologist is at Georgetown University, Anne O’Donnell. You are in a good area to find great physicians. Look on NTMinfo.org, go to patient tab, then to physician referral.
@janeted, Hi Janet. I was wondering if you ever found a good physician to see about your MAC? Please keep us posted. We do care, and would be interested in knowing how you are doing. Sincerely, Terri M.
@jeaniet, Hello Jeanie! I see I failed to welcome you to our forum as a newcomer. I apologize for that. I don’t know if you have had time to read through past posts or not, but I promise, you will learn a lot if you do. Our previous mentor, Katherine, was our trail-blazer. She has many posts on her thread @katemn, that has a bevy of good information. “Knowledge is power” as she’d always say. We are our own best advocates for ourselves. The first priority is finding a good pulmonolgist and Infectious Disease doctor. I have found that seeing doctors at teaching institutions tend to be current on our diseases (MAC & Bronchiecstasis) and treatment. As @lauralynn, had suggested, NIH would be an excellent place to go. Have you found other places besides NIH in your area? If so, would you mind sharing that with us? After years of illness and seeing ‘Local Doctors’, I did not get properly diagnosed and treated until I went to the Mayo Clinic, that is why I recommend the large institutions over the small private practices.
We have all been in your shoes. Remember, no question is too small or stupid. Please feel free to share with us too. We are here for you Jeanie. – Terri & the other forum members
@jeaniet, Me again…. I just thought of another place where you might find good, knowledgeable care. Are you familiar with INOVA Mount Vernon Hospital? It is a research medical institute. It was named number one by U.S. News & World Report.
Thank you for the welcome. I don’t feel I have gotten a proper diagnosis but have started the 3 meds. My local pulmonologist. has really dropped the ball and is avoiding answering my questions, my navigational bronchoscopy and needle biopsy were a bust, and I was diagnosed by something called a bronch wash that was obtained during the bronchoscopy before they had to abort because I started coughing / bronchial spasms. The needle biopsy only got 2 out of the 4 hoped for samples because I had a small pneumothorax . These two tests were done to rule out lung cancer but I’ve yet results that say specifically that! I’m angry, frustrated, and appalled with the gross neglect I’ve witnessed to date. Needless to say I am a mess….physically and emotionally. The good news is that I had a second opinion appt at Hershey Medical Center (PA) a teaching hospital near my home and it was a breath of fresh air. I also have mid Sept appt in Philly at Penn Harron Lung Center with a doctor who is one of the founding directors. Thanks for letting me vent!
@janeted Janet, it sounds like you are on the right path now. Your experience with the bronchoscopy sounds horrible. I totally get your anger and frustration with the medical community. Been there, done that. What did the Hershey Med Cen tell you?
They want to do a needle biopsy on a lymph node near my collarbone that lit up on pet scan to rule out cancer. That will hopefully happen next week. Then they want to see my CT scan that is scheduled after 8 weeks of meds….end of Sept. Doc said there should be some indication of improvement at 6-8 weeks and if none he will do a bronchoscopy, and do it right.
@janeted, Janet, what day do you go in next week? Please keep us posted. – Terri M.
Thank you for the welcome and the suggestions! Just seeing these post as I’m still learning how the group messaging board works. I made an appointment with Georgetown but can’t get in until November. Inova Mt Vernon is right down the street but never thought to look at that hospital.
Thanks you for all of the postings.. I know so little and this has been a great resource. Jeanie
@jeaniet Hello Jeanie. I had a hard time figuring out how to use this this too in the beginning. First you have to be ‘logged’ in on the Connect site (you probably got that already) When you click on the ‘view & reply tab and it brings up the ongoing thread, you then hit the ‘Reply’ tab. I then do a copy and paste of the person’s @name in the reply box. That way, it ties your reply in sequence to the conversation. Did I make sense? Let me know if you still have a problem with it.
@jeaniet Also wanted to add that you should most def get good treatment at Georgetown; they seem to be VERY current on this disease and treatment. Can you call and see if they have any cancellations where they could fit you in sooner?
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