At NJH and need to vent

I always find it ironic that NJH is at such a high altitude. I would not be able to breath at all. Last time I was at just 3000 (years ago) I had much SOB. Have it much of the time now in low Iowa! Altitude can really affect anyone and especially if you have any lung issues at all. So do not worry. It is from the altitude.

I agree, 93 is great! One of the docs at NJH told me that what his is! I was greatly comforted by that. So many of us understand that the fear that comes with the not knowing about this disease. I've read/researched everything I could get my hands on for the past 13 years...some too technical to make sense of, and some very informative and helpful. But I stand by my "One size does not fit all" with this disease. IF there was a treatment that offered all of us a positive outcome at the end of it, we'd be much less afraid. And I honestly believe NJH is doing research that will be beneficial, if not to us, to future generations of NTM sufferers. In the meantime, we look to one another for comfort and acceptance. I've never been judged on this forum for what I do or don't do...the beauty of sharing from the heart with folks that truly get it. Hoping for a peaceful day for you. Busy

Hi Everybody,
I’m in Denver at NJH, but leave at the end of the week. I found out I do have bronchiecstasis also. I thought I just had Mac. After discussions with Dr Eddy and Dr Daley I am not taking the big 3 . I violently react to many drugs, especially antibiotics.
The present plan is to wait three months….see Dr. Colin Swenson in Atlanta who is good with MAC and Bronchiestasis. My Drs at Jewish think highly of him.
I’m told to continue nebulizing with 7% saline, am purchasing a cummerbund type vibrating thing, the vest exacerbates my fibromyalgia too much. Aerobic exercise..getting a bed that raises at least 30” at the head…..they think reflux could have caused this possibly. I’m to get sputum samples often and I guess eventually another ct scan to compare.
I was adjusting to the idea I have the Mac, but now hearing I have bronchiecstasis has set me back. The FEAR thing has crept back in. I’ve been using oxygen the whole time I have been here in Denver cause the altitude has caused me to have breathlessness.. They say when I get back home this will go away. I think the idea of using the oxygen freaked me out.
I’m getting thoughts like what if this disease gets me to a point where I can’t breathe? My mind is all over the place…AGAIN. TAKING LEXAPRO for anxiety and .5 zanex as needed right now.
I feel like my whole life has changed now…….I’m scared….I’m in grief…..and hate these feelings. I’m praying……any help would be appreciated. Did a lot of you go through this at the beginning?

No doubt a very rough rode but the mental thing is part of the battle. Fight the good fight & as I believe you are a fellow music person - use that as the best tool in the box. Happy 4th!

Dr. Kubler-Ross worked with terminally ill patients and wrote a book in 1969, "On Death and Dying". She observed 5 stages of grief: denial, anger, bargaining, depression and acceptance. Nowadays some think the model is outdated but the simplicity of it helps me when I'm struggling with various life challenges, including bronchiectasis, asthma, clearance routine, et al. Perhaps it might be helpful to you @healthybon .
https://en.wikipedia.org/wiki/Five_stages_of_grief

It is scary, isn't it Bon? But here's the thing, a diagnosis of bronchiectasis is not uncommon when one has NTM/MAC. I've often considered bronchiectasis the least of my worries. I still walk three miles a day, still don't need O2, and while often fatigued, am still able to breath okay most of the time.
This response is from the National Institute of Health when asked this question: What is the life expectancy of someone with bronchiectasis?
If properly treated and monitored, most people with bronchiectasis have a normal life expectancy. People with bronchiectasis are more likely to die because of other medical conditions that affect all people (like heart disease or cancer) than to die directly from bronchiectasis.
I hope that once you leave NJH and return to your life, your anxiety will lessen. Being there - and for me even the thought of going there next week for a follow-up - makes me very anxious. So I pray, I play with my dog, I reach out to friends, and I know that I am doing all I can do. It might not be what someone else with NTM does, but it's all I can do. If I'm afraid and need to cry, I cry. If I'm angry that I'm still isolated after 3 years due to the pandemic, I need to clean something. If I need a hug, I ask my husband. If I need an ear to vent, I call a friend or come to this forum. Your diagnosis is not the end of your life. You will need to be more careful around other folks, do your airway clearance, eat well, and exercise. But you are going to be okay. There is life with NTM and bronchiectasis. Busy

Excellent "busybeans"...For me, you're spot on! I would love to actually meet someone face to face with NTM as I have felt I've been battling this on my own, but where I live, it's even rarer. However, I have made it through the storm and on the backside of it. Can't say remission, or can I? There's no getting away from it, but I continue to do my precautions and appreciate each day that I'm NOT on medications. It's quite a journey but you'll get through it and learn more about yourself in the meantime. Blessings!

I don't have MAC but have been colonized with pseudomonas for well over 10 years. It took several years to be diagnosed with bronchiectasis. I think any life-changing diagnosis brings a tsunami of emotions. We often go to "worst case scenario," even though it may not ever happen. I, too, have experienced fear and grief. But after I pray through it and get armed to with more information, I try to focus on what I have and not what I've lost.
I hope that once you are home and settled into your own surroundings - without the oxygen, you will work through all this and start afresh! We're rooting for you!

Nicely stated. I say live life as much as you can. No bubble for me other than avoiding possible covid contact. I missed quite a few graduations & funerals. While limited, I still enjoy the outdoors. Mountains are tough now, but I seem to like the beach.

Bon,
My Doctor at Mayo told me that I would die with Bronchiectasis and NTM but not because of it!