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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Has anyone been to National Jewish Health in Denver Colorado?? I did a phone consult with them this morning; pending an appointment. I am just trying to figure out if I will need to take a week off of work to fly up there or if it will just be an appointment 1 day.
Replies to "Has anyone been to National Jewish Health in Denver Colorado?? I did a phone consult with..."
Hello cowgirlmt, been at NJH and first visit it about 10 days or 2 weeks. They check everything on your body. They are good over there. I have Bronchiectasis and MAC. MY Dr. here put me on 3 meds then after a year I had new nodules and he add another antibiotic. I took them for 18 months. When I saw Dr. at NJH she told to stop taking them. The meds made me sick on my stomach. I just came back from there last month. I do breading exercise, inhaling saline and physical exercise. Just wait and they will let you know about your appt. and you call them and ask question. I will have you in my prayer just hang in there. God Bless you and guide you. Cila
@cila So, do I understand you correctly? You are no longer on any antibiotics? I am glad to know that you are at least doing the saline, that is very good for keeping the lungs clean.
@cowgirlmt...I went to NJH in jan 2017 ....then again for. Follow up in January 2018.
Cilia gave a perfect summary. If you have a time limit....ask them/tell them about it when they call to schedule. I brought with as well as had clinics send reports and CDs of tests I had done here in Wisconsin .that might save time. Ask some more questions that you have of the NJH patients. Tdrell
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@cowgirlmt Oh my gosh girl! You have no idea how glad I am that you will be going to NJH Good help is on the way! @tdrell (Terri) has been there several times for treatment. I am sure there are others as well who will hopefully jump in. You will need to make the appt. first and ask about what tests they want to run on you. The Mayo ran all of mine in one day and then I met with the pulmonologist at the end of the day. We went over test results and a treatment plan. Please keep me informed about when you are going. You of one those on my 'Most worried for List'. You may not hear from me every day, but I worry about you every day. That goes for others that I know of that are very ill and feeling especially terrible. For now, cyber hugs for you.