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

Yes I am finding that out also and it should be compulsory that every physician learns about it in my opinion especially pulmonary they don’t have a clue I learned everything I know from this Blog thanks to you all

So the doctors have you using hypertonic saline instead of Albuterol?

Hi Bon,
Nice to meet you!
I understand the anxiety that comes with this disease. Most probably, we have all experienced it at some time. As others have said, educating ourselves on trustworthy sites can be helpful. A good resource is the NTM Info & Research YouTube channel and their excellent webinars. Below is one example, however, Dr. Devon Smith from National Jewish Health has done many webinars as part of their Emotional Wellness series.

Learning how to manage anxiety and depression with a disease that we will have for a lifetime is a worthy undertaking. One practice is to try our best to not get ahead of ourselves. Not all cases of MAC need to be managed with antibiotics. Airway clearance, exercise, healthy eating and stress management are always useful and in some situations might be enough. Talk to your doctor about a "watchful waiting" approach. Certainly, it will depend on your particular situation and going to National Jewish for a second opinion is an excellent idea.

Personally, I was diagnosed with MAC in 2017 and to date, have not needed to take antibiotics. I am presently culturing negative and attribute my current health to making lots of little changes. I see in a previous post you asked to speak with someone. I was fortunate to speak with a patient advocate when I was first diagnosed and that was life-changing for me. So, I like doing the same for others. I offer a short talk to help people put together a couple of items to discuss with their medical team. I do this as a form of "virtual community service." Contact me if you are interested.
BE well,
Linda Esposito

I only use Albuterol spray when I am wheezing which is not often and usually before the saline neb if I remember. Albuterol does briefly raise heart rate and blood pressure. I don't use Albuterol in the neb. The saline works so well for me that if I forget the Albuterol it really makes no difference.

Hi Linda, I watched the video you sent…….it was very good. I would love to hear about anything you do to make your thinking better and not be afraid. I know you have NOT taken the antibiotics……I know my body would not tolerate them…..I have not, to date, really been fully evaluated and spoken to….and that is why I am very happy that I will be going to NJH. Just waiting to hear about when the appointment will be.
Because of my lack of knowledge about my condition, my mind goes to the worst scenarios….I have literally learned all I know so far from the Mayo blog…..and the people are so kind and helpful….
I am riddled with fear….usually interpreting things in the worst light. I wake up in the morning with dread, knowing I have to nebulize, knowing all that fluid will come out and it scares me. I know it’s good it’s coming out, but why is it there to begin with?
I would love to speak with you if the offer still stands. I can use all the help I can get. The counselors I have been to have not been helpful…they don’t “get it”. …..thanks Bon

Hi….Liz, when you use the saline nebulizing….do you cough up clear phleghm? (Occasionally small little yellow stuff in it, not,often) Sometimes there is more phleghm than other times. Does this happen to you? I have MAC, is that what you have.? I’m waiting to hear from NJH for an appointment time….and will go to Denver…..I live in Georgia. Do you get scared? What do you tell yourself…to help yourself? Thanks Bon

I cough up all colors! Sometimes clear, sometimes yellow, sometimes green! It's usually thin watery but sometimes a little thicker. I don't have MAC but I do have pseudomonas and have recently recovered from pseudomonas double pneumonia. I'm 77. I could barely walk because of shortness of breath for quite a while but I am walking now 18 minutes 1/2 up a hill now. I do take xanax before doctor appointments because they cause me panic attacks. I got scared when I had heart failure left ventricle but it has resolved itself and my heart is back to normal.. I had difficulty sleeping because of worrying. Cardiologist was going to implant a defibrillator if my heart did not improve but Thank God it did. I don't know how to help the worrying. It hits me at night and is like a hamster on a wheel but I try every day to "focus on what I can do not on what I can't do". Sometimes I take a xanax to sleep.

My Doctor at UCSF in San Francisco doesn’t listen to me at all. She said there is no alternative to Albuterol which makes me jumpy and anxious. She doesn’t listen to me and doesn’t respond to my messages. I have MAC and have not had any appointments, information or help.
This is the first thing I have found that is any help at all.

Hi Linda, I am interested in any help that you can give me. I am really frightened. I have been given no information by my Pulmonologist, I am trying to change doctors, and have an appointment with an infectious disease doctor at the end of this month. I would like to have information at hand that doesn’t necessarily include starting treatment with the 3 antibiotics , I did that 5 years ago and my hearing suffered. If I can live with this for as long as possible without treatment I’d like to do that. Help is needed and welcome. Thank you

I would be happy to speak with you for a few minutes if that would be helpful. Please message me. Linda Esposito