Feeling lost - can anyone give me some guidance?
I'm 77 and have had PTSD for 40+ years but didn't know I had late stage COPD till 4 days ago. All the Doc said was 'end stage' COPD out of the blue. No tests (like FEV1) other than 2 X-Rays and stethoscope sounding of chest.
I am on 24/7 O2 (3LPM). I have been on Valium 10mg x 4 per day since 1968 and this supposedly suppresses breathing. I am VERY SOB even on O2 - panic/anxiety. I have a nebulizer and duonebs but don't even know if I am supposed to use that routinely or ??? The doc has told me nothing (no insurance but would pay) and I am lost and terrified. So short of breath and no mucus coming up.
ANY guidance please? I have not been off the net since told that 'end stage' thing but there is so much to take in and I am just in panic.
Hi HGP1943, and thanks for posting your concerns here. We hear you! It can certainly cause some anxiety when one receives a new diagnosis of COPD, especially since it was termed 'end stage'.
I'm a little surprised the doctor sprung this on you and the way it was done. In general, a thorough evaluation would typically include a pulmonary function test as well as other diagnostic evaluative tests. I thought you might gain some additional insight from these two articles on COPD tests and diagnosis:
First, this part 1 article: https://copd.net/clinical/tests-diagnosis-part-1/.
And next, this part 2 article: https://copd.net/clinical/tests-diagnosis-part-2/.
It's also somewhat surprising that you've been placed on supplemental oxygen therapy and medication therapy with no instructions or guidance from the physician or his staff. Whether you are insured or not (and I understand you have agreed to be a self payer), the doctor is obligated to provide you with information and guidance about your condition and planned treatment, as well as follow-up visits and care.
You can always go back to the doctor to find out more or, if you prefer, you may want to seek out another physician (possible a pulmonologist - specialist), who is more attuned to the type of care you need.
What do you think?
Leon (site moderator COPD.net)
