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← Return to At NJH and need to vent
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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?
Replies to "Hi Everybody, I’m in Denver at NJH, but leave at the end of the week. I..."
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 Nowadays some think the model is outdated but the simplicity of it helps me when I'm struggling with various life challenges, including bronchiectasis, asthma, clearance routine, et al.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
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!
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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!