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

I too lived in extreme fear of being told that I needed the antibiotics. I was told by two Doctors to start them and I refused. I finally went to Mayo in Jacksonville and my Doctor at Mayo has put me on airway clearance. She told me she would not put me on antibiotics unless I had a flare and it would be no more than 2 weeks.
My blood pressure has gone off the charts also because of fear, the levabuterol, and 3% saline solution. I have gone off both of those and now only use the aerobika and huff cough. Since I only started this at the end of the year, I don’t go in for more testing until mid April.
I have started exercising harder and after exercise come home and do the Aerobika and huff cough and there is no difference in what I cough up with this method compared to using the nebulizing drugs. I never coughed up much anyways.
Follow your instincts on what is best for you and your body.
Good luck!

Who may I ask is your doctor at Mayo Jacksonville?
I’m new to all this and am also a Mayo patient. I wish there was an in person support group. Mary Beth

Hi Bon,

I am very sorry to hear about your panic attack. I feel for you, because I was in the same boat last year. I went to the ER 3 times, my blood pressure went to 200, and stayed at 200 for a few days. I had never had a high blood pressure problem in my life. My heart rate went to 120, but a heart checkup showed that my heart was fine. You see fear is a terrible emotion to have. Like you said, part of the reason to have fear is because of the unknown. But when we give some thought about the unknown, most of the things in life are unknown; we think we know, but in fact we don't. Seriously.
What we truly know is only the moment we have right here, right now. Acceptance also helped me to get over my fear. It is not a passive acceptance, but it is realistically informative, accepting the truth, accepting the change of my body. I am 71 years old. I was always active; going to the gym was part of my life routine for 30 years. The sudden change in my body was very hard for me even to understand, let alone to accept. There is a very elegant Chinese phrase I like very much: 顺其自然. It is my daily reminder. When translated into English, it sounds plain: "Let nature take its course."
I understand that in order to reach the point of being at ease, I have to know as much as I can about my condition. This support group has helped me so much. There are many kind and loving people here; they offered their experiences, and from their experiences I gained the knowledge, the comfort, the courage to manage my condition. I have bronchiectasis, and have had a year-long struggle with it. I have not tested for the MAC yet. I am thinking if I do have MAC, I probably won't take antibiotics based on what I learned from other people's experiences. There are so many inspiring people here in this group; from their spirit, I have learned to try not to let the condition control my life. Live the life I want, life is short, no more wasting time. I hope you will get over your fear soon.

Take care!
Ling

My Doc at Mayo is Dr. Hollie Saunders and I like her a lot.
I see her on Monday and am going to take in a written letter and find out the Doctors that are the head of Pulmonology and Respiratory Care.
I will politely tell them that I was disappointed with the instruction I received on a zoom meeting with respiratory care. I will not list all the points I will address. I will also respectfully ask for them to create a handout that can be emailed with specific instructions about nebulizers and how to use the Aerobika.
I had to find out all this info online and through this group.
Also, I found out Baptist Beaches has a handout on the flutter( Aerobika) that has helped me so much.
If you would like to chat on the phone, please send me a private message with your phone number.

HealthyBon, When I had my bronchoscopy and waited for results, I started watching YouTube videos from National Jewish Health and NTMir. One of the things that stayed with me was one of the National Jewish Health doctors said of NTM “you may die WITH it, but you’re unlikely to die FROM it. My pulmonologist started me on airway clearance (nebulizing with 7% saline but didn’t stress how important that is on keeping the germs knocked down. I got that from the group here. My pulmonologist and ID doctor both pushed for me to start the antibiotics but I didn’t because I was feeling fine. I’m still doing well after almost 2 years later and still no antibiotics.

I presently have a pulmonary in Georgia who knows NOTHING about MAC. I am not going back to him……
I started the ball rolling to go to National Jewish Health in Denver Colorado. I still don’t have a definite diagnosis as to details of what is going on with me. It is terrible not getting the right treatment from a doctor. Tuesday is my phone interview with NJH, and then hopefully they can tell me when I can expect an appointment.

Diagnosed 13 years ago, I developed panic attacks pretty quickly. They hit the minute I lie down to go to sleep - the time at which I most often have frightening episodes of hemoptysis. I take an anti-anxiety med so I can get to sleep. I also see a therapist - someone who listens without judgment, encourages me to cry when I'm feeling discouraged, and understands my frustrations with medical community. It's hard living with a "rare" lung disease, that let's face it, not many physicians or even pulmonologists know much about. I live in a large city in the southwest and cannot find ONE doctor knowledgeable about NTM...that's why I started going to NJH and go there at least twice a year. I do have a deep faith which I believe helps me on a minute by minute, day by day basis.
Bless you...this community of "understanders" is here for you.