NJH Patients
Hello!
I have an upcoming appointment at NJH for outpatient treatment. I made the appointment upon first hearing about my MAC diagnosis, however...I am not feeling sick in the least! My diagnosis consisted of both CT and sputum positive results. Currently I feel like I should I delay my visit to NJH until when / if I ever feel unwell due to this condition. My kids say go now to nip it in the bud...What to do?
Cheryl
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Yes, nebbing albuterol is rough. Always makes my heart beat way faster than it should.!
Look into levabuterol HFa…use goodrx .com coupon to bring down cost.
Go now! I became ill mid 2021 and went to a couple of ID docs in my area. I too was anti-symptomatic for MAC but had classic bronchiectasis symptoms. I was reluctant to start the antibiotic regimen 3 X per week for MAC. I did a massive amount of research, and then I self referred to NJH thinking they would confirm my decision to delay treatment. I went in November 2022. I was due to be there for 10 days. The tests and results were thorough, professional and explained to both my husband and me with great care by the top docs at NJH and the diagnosis was confirmed within 3 days, so I was able to leave early. I had a definite MAC & bronchiectasis case. I started the 3 antibiotics in early December 2022 . My recent sputum culture taken in early February came back as negative, zero MAC cultures. I feel 85% better. The NJH experience was life-changing. By the way, I am a 75 year old female with my own business and an active family and friends life.
I wish you luck.
I am waiting to hear from NJH. Do you have any suggestions for me? Did u stay in a hotel.? How are the meds agreeing with you? I’m scared
How long did you wait to first hear from NJH after reaching out? How long did you have to wait before going there? There are no knowledgeable drs here where I live, so I am hoping and pray NJH will take me soon. I desperately need an evaluation and help, physically, but also mentally. I have a horrible anxiety problem from being in limbo and not getting help with the MAC.
Any direction, or advice you can point in my direction would be a Godsend right now. Thank you
I made my appointment to NJH in January. They will call you and ask many questions before they give you an appointment and then if you have specific doctors you want they have to work that out as well. You will then receive a packet in the mail (which also includes places to stay, etc.) to read thoroughly and send in a sputum sample. You will be appointed an "Ambassador" and she is great about answering any questions. I go on May 2nd-May 12 and I can't wait.
Thk u so much
do you have a pulmonologist in your home town that follows up with you after you have been to NJH?
Yes, I have a Pulmonologist and Infectious Disease doctor that I see on a regular basis.
I'm going the fist week of June. My ID doctor wants to start me on doxycycline for maintanance,... 6 mos. I'm going to hold off though since I'm feeling fine rn.