Panic Attacks with new diagnosis and fear of the unknown: What helps?

Yes, my first sputum test done almost a year after my bronchoscopy was negative. My original pulmonologist didn’t check my sputum when I finally started producing. She just wanted me to start the antibiotics and I refused. When I got an appointment with NJH they sent me a sputum kit so I could send in a sample well before my appointment. That is the sputum that test negative. NJH agreed that I didn’t need to start antibiotics. Doesn’t mean it’s totally gone but it’s not a high enough load to show up at this time.

My pulmonologist was insistent that I use albuterol before the saline, even though it was making me jittery, making my heart race, and sometimes kept me awake at night even though I didn’t use it before bedtime. I finally stopped using it in the evening and did the albuterol only in the morning but still doing saline twice a day. She finally prescribed levalbuteral which was a little better but I still ended up using it morning only. When I went to NJH and they did my lung functioning test, part of it included checking the effectiveness of albuterol with me and it made minimal difference so I don’t use it at all now. Saline only.

Hi @kwi,
Thank you for your posting. I am in the same situation. My pulmonologist asks me to use albuterol before using Aerobika. My lung function test also shows little difference with or without albuterol. In your case, did the NJH doctor agree that you stop using albuterol?

Thanks again,
Ling

Bon,
I have allergic to 19 different meds. I have had antiphylactic shock, and am nervous to take anything. Then I had my first 2 mycrobacteria infections, I did them at home. IVs done myself, through a pic line, then a port, twice a day, for 9 months, 3 times a week, I also took 3 oral meds for 18 months. Scared? Yes. I did all the first IV and the first pills at the hospital. I was at NJH, so that made it better. But Im sure your dr. would let you do the same. I was also on ativan.
Now, years later, I have MAC. No meds yet, but Ive been on inhaled Tobi often. I have panic without the med now. I go to therapy. My heart has problems, and the constant anxiety and panic make heart issues worse, and pressure go through roof.
I'm not pushing anti anxiety drugs to anyone. That said, I could not have done any of this without them. They arent for everyone, and they can be addicting. I have tapered off twice. Something comes up, and I am back on them. Only small dose to calm me down.
Fear is a real thing, but without the drugs for these mycrobacteria, think of how bad things could be? The first time, they gave me my life back! That was 17 years ago. Talk to your doctor please.

Hi Cath,
Thank you so much for sharing your history with me. I know you’ve been through a lot… I really feel for you. It sounds like you were very strong person and I admire that. I totally agree that sometimes you have to take something when you’re nervous wreck and that’s why I’m taking Xanax and Lexapro right now. I need it plain and simple. I think this disease can cause a lot of anxiety and In my case I have yet to talk to anyone in the medical field about my exact situation, which hopefully will come when I get my appointment with Anne NJH. I have sent them my records, so I’m waiting for the next step, and hope they see me sooner than later. I wish you the best of luck and I’m always here if you wanna text me I will always answer you and support you. I wish I could make it all better for you and for all of us. love Bon

My next appointment at UCSF is next week. I will bring up about the saline. I am wondering if I should consult at Mayo, or do people go to NJH? I do t want to chase around, just want some good information and a doctor that will listen and work collaboratively.

How do I do that?

My doctor at NJH left the decision up to me. The results said only a 12% difference (I guess in opening my airways) and it wasn’t immediate, the reaction happened later. He suggested that I could use it before I exercised-if I wanted to.

I went to NJH because I felt like there was so much information that I was not getting from my pulmonologist. She quickly diagnosed the bronchiectasis, ordered the bronchoscopy to check for NTM and prescribed albuterol and 7% saline to be nebulized and sent me to an ID doctor that I didn’t like. Both wanted me to start on antibiotics right away but I had already watched various webinars from NJH and NTMir and knew from others (like on this website), that there is more information that I needed out there. I had a few follow up visits with the pulmonologist, but I felt like I was put on hold until I decided if I was going to take the antibiotics. She really had nothing else to offer me except to order more scans to check the progression. Have you checked the NTMir website for recommendation doctors closest to you. I was happy that I went to NJH and I’ve seen that others are happy with their visits/doctors to Mayo in Rochester. There are other places considered as Centers of Excellence for pulmonary care besides those two centers.

Many thanks @kwi for your info. It is very helpful.
Ling