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Should I go to National Jewish Health even though I'm new at NYU?
I have a decision to make. Background: I have bronchiectasis and a MAC infection that first turned up in September 2024 but didn't start treatment till April 2025. Had to stop the Big 3 in July b/c of ototoxicity. Was seen at Stanford in CA from bronch diagnosis in 2018 till I moved to east coast; see Dr. Michael Rey at Penn since April 2022; just saw Dr. Adrizzo-harris at NYU last week b/c I wanted a second opinion. I wrote in another post she thinks I need lung resectioning - something Dr. Rey has never ever touched up - very disconcerting to me. Here's the question for this post: I also have an appointment for the week-long assessment at National Jewish for September 18, 2025. I'd heard Dr. Adrizzo-Harris say in seminars that she works with Nat Jewish. But when I saw her last week it seemed to me she wanted me to do GERD work at NYU rather than going to Nat Jewish. I don't want to "annoy" her and I get it that maybe it's smoother for her if all my care is at NYU -- but after the shock of what seems like a big divergence in what the two pulmonologists are saying, my gut says I need to be my own advocate. Would love the community's thoughts. Am I overdoing it seeing Adrizzo Harris and still going to National Jewish?
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Scoop, thank you for providing a nice path forward, vis a vis NJH really being a second opinion (not a third per se) and how to convey my choice to go to NJH to Dr. Harris in a positive way.
I really really appreciate it. I get such great advice and things I never thought of on this forum.
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2 ReactionsI sure hope you can continue with the 3%. BTW, when I first read your post, the first thing that came to mind was "go with your gut", so glad Sue and Scoop wrote that. Count of 10 is low-but get what you're saying about that being after meds. Speaking of count, I came across a very interesting study. So far, just in the mice stages but it sounds like a phase II and III is in the works, using Benztropine (70-year-old drug-which can fast track testing) to reduce and keep the count down in TB patients. I have attached the article below. "The drug blocks a receptor on macrophages that TB bacteria exploit", so instead of TB killing the macrophages, the macrophages can kill the TB. From my understanding, the same thing happens with NTMs but I'm not sure if the receptor is the same. I do plan on asking my Dr at NJH that tomorrow-i.e. is it the same receptor. I did message her about it, and she replied, she had seen the study and thinks it's "super interesting", and that she plans on watching for the phase II and III studies.
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2 ReactionsHi Janis, I was diagnosed with M. Abscessus in Nov 2024. I'm so sorry, It's scary. How is he doing? I am so glad you are taking him to NJH. I was there in May for 12 days. Just a few things: I installed an ultrafiltration system at my sink for drinking, cooking, and washing fruits and vegies. I also drink bottled spring water. I installed a shower head that works really slick, where the shower head pops open and it drains-really easy, so no water collects in shower head for bacteria and mold to grow. Material is also antimicrobial. I may add a filter but for now just not taking hot steamy showers-and I keep the shower door open, and bathroom ventilated. Eating and drinking can also be problematic, but not for everyone and he will be tested at NJH. When gardening, I also wear a mask. At this point, I am hopeful that research will continue and someday soon the treatment will be much improved. This site is wonderful! It's a great source for information. I have learned so much on this site.
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2 ReactionsHi njlynn, thank you for your prayers; that means a lot to me! I was always a praying person, but now with my sons' diagnosis, my prayer life has increased. I trust in God - no matter the outcome. When I saw what my son was dealing with on a daily basis, I thought of all the other people with NTMs & pray for them- every day.
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2 ReactionsHi kathyjjb, thank you for your note! Can you tell me the name of your ultra filtration system at your sink? Is it under-the -sink or on the countertop? I would like to get one. I saw online the shower head that you have. I have been looking for one that has a 0.2 micron filter; the ones that Dr. John Falkinham suggests are more for commercial application in hospitals, ie. Pall Medical, AquaMedix & Aqua Tools. I will keep looking.
@njlynn
I hear your pain having experienced a similar issue with a breast cancer diagnosis.
What is not clear to me is what Michael Ray at Penn diagnosis was.....
If he also felt that lung resectioning was the best treatment and now
NYU Doc feels that same......I must say I agree with Sue our mentor.
However if Dr. Ray was not saying surgery, you have the means to do a full evaluation at NJH by all means follow your gut as long as the waiting time is ok with your other docs re: surgery.
I do feel
Another way to think about your decision to also have an NJH review and opinion.
If you don't go you may, down the line, question yourself...."should I have gone." As always and as so many have said and what is so true...'"go with your gut".
Going to NJH might satisfy your questioning and it might not...we just have to keep doing all we feel we need to do to hopefully get answers and help us make decisions. No matter what there will definitely be some learnings if you go. Just be sure you get as much information as you possibly can before you go regarding what you need and want to know.
Barbara
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3 ReactionsI went to NJH after Mayo for my complex pulmonary issues. Mayo saved my life, NJH refined the diagnosis from Mayo. I would absolutely go to NJH for another opinion. I saw Dr. Cooley (ILD specialist) while there. He was wonderful!
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2 ReactionsHi Jan, go to: wholesalewatercooler.com and search for the Raintree Ultrafiltration system. I had my plumber install it under my kitchen sink and the faucet, is next to my kitchen faucet. The kitchen faucet is in the middle of the sink and I had the UF faucet installed at the sink corner. Works great! The customer service people are very helpful there. I'm thinking it was $189. I did see a shower filter that I believe is made in Amsterdam, I sent an email but never heard back. I will look again later. I also turned up my water heater and plan on draining it as well. Is your son nebulizing 7% saline 2x/day? I do it religiously, even if I am travelling. Kathy PS: I will be praying for you and your son as well. Kathy
hi kathyjjb, I will look at the Raintree system. My son is on an infusion- 2 meds in pick line at the hosp. every day. 12 hrs. later, he does his own infusion at home along with an oral antibiotic. He was never told about nebulizing. I am learning a lot from this site! thank you.