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Should I go to National Jewish Health even though I'm new at NYU?
MAC & Bronchiectasis | Last Active: Jun 5 1:04pm | Replies (34)Comment receiving replies
Hi njlynn @njlynn, my son was diagnosed with M. absessus about a year and a half ago. We will fly to NJH in Denver in a few days for a 12 day session. Yes, it's costly, but I feel that we will have a better handle on how the treatment will proceed. (We are just learning NOW about re-contamination from tap & shower water. After much research, I ordered the' Lifestraw Go' water bottle on Amazon. Today I will research Water Pitchers with a 0.2 micron filter. I discounted UV rays due to the fact that NTM bacteria have a 'harder shell' than most other bacteria, therefore the UV rays cannot be relied upon.) My advice: If you have MAC, see the best- and that is National Jewish Health. My best to you! Janis
Replies to "Hi njlynn @njlynn, my son was diagnosed with M. absessus about a year and a half..."
Hi 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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thank you, Janis. I really appreciate your perspective and I will be keeping your son in my thoughts while you are in Denver!