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NJH Patients

MAC & Bronchiectasis | Last Active: Nov 24, 2023 | Replies (108)

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@Cathln

I went to NJH in October. I've had MAC for over 11 yrs. I also had a lousy Pulmonary doctor. I have other problems too. Pulmonary Hypertention is the big worry. I mentioned it to this lousy dr. and he actually said; "who told you that?" Thats why I went this time. While there, I had many tests, including cultures, bloodwork and a ct scan. I say physical therapist, resperatory therapist and learned better ways for lung clearence. Was very happy to see PH is still mild. Also, MAC is just there. I am not sick. It is a slow grower. I went for my own peace of mind.
I went in 2007, when I had 2 mycrobacteria...Kansasii, and Abscessus. Had surgery. Was on IV meds for 9 months, 3 times a week, twice a day, done by me, at home! Also oral drugs for 18 months. I went to Denver, from NY every 6 months. They are the best. I got rid of those two mycrobacteria!
They tell you the truth, and keep in touch with your doctor at home. My knew Pulmonologist was happy I went. Helps him out too. I am no on steroid inhaler which helps so much. Also on saline nebs which lousy doctor never used. I think its a win win!
They now think it is better to wait. From experience with the other drugs I was on for so long, I agree. They can be rough.

If it eases your mind, and your families, then you should go. There is alway something new to learn while there.
Once you go, you are always a patient. They kept all my records. Its not like starting over each time, even years apart! I will go back!

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Replies to "I went to NJH in October. I've had MAC for over 11 yrs. I also had..."

I have MAI diagnosed since 8/22. I just had my second Pulmonary Function Test and it showed a significantly lower diffusing capacity. My pulmonologist mentioned either repeating the test or doing a right heart Cath to check for pulmonary HTN. Can you tell me more about your pulmonary HTN and how it was diagnosed and checked by NJH to determine yours was “still mild”. Thanks in advance