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← Return to At NJH and need to vent
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Unfortunately I agree that NJH's after-care is abysmal - and I've been going there a long time at least a couple of times a year. My problem is that where I live there is only one pulmonologist knowledgeable about NTM, and the radiologists who read the scans don't seem to understand what they're looking at. This is why I continue to return to NJH. I know the radiologists/physicians there know exactly what bronchiectasis, NTM tree-in-bud, and cavitary nodules look like. My ID doctor goes through my scans with me slice by slice so I'll see and understand what he's seeing. Based on NJH's radiologist's interpretation and the doctor's report I am able to achieve a level of acceptance based on fact (even when new stuff pops up). I really wish I didn't have to make the journey to Denver; it's an expensive, time-consuming, and exhausting drive (I still won't fly). I'm headed there in 9 days. Wish me luck!
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Hi it’s me AGAIN. This is all new to me. Six months along. I’ve been praying and asking God to help me not to be afraid. When I get a little short of breath it freaks me out. Can you give me some mental tips to combat it. When my costochondritis is active (which it is): I get that breathless feeling cause it’s all inflamed in ribs and then it subsides when that calms down. Also the altitude here causes it….so I’m using the oxygen they gave me. I wish I could just ignore it and go about my day. I think I have a fear that I won’t be able to breathe. I wish they had psychological counseling at NJH, cause it’s a big part of all of this..to have this happen to your lungs.
When you get breathless at times how do you deal with it? I have way too much fear………and no one to talk to about it. My life is so different now…….I know I have to have acceptance..it’s the breathing thing that is scaring me……any suggestions? I feel like the people on our blog seem to have adjusted to this aspect..they don’t talk about the fear thing /and the breathing much. Why am I so terrified. Thks Bon
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Yes, I know how draining traveling to NJH is. Where I live in Georgia it’s slim Pickens for good doctors. I did find a Mac Bronk specialist Dr Swenson in Atlanta, and have an appointment on July 20. May I ask you, are u on or have you ever taken the big 3? Do they want you to?
Dr. Eddy at NJH told me the other day I have CO P D. As well as Bronk and mac. Today he told me he’s not sure I have COPD AND I was a basket case last night of fear; because he told me I had it and wasn’t sure. Thank God I am seeing Dr Daley all next week until I leave on the 7th. I want his opinion. I am very surprised I would be told this and the dr not be sure. Very upsetting.