I am a petite 68 year old woman. About ten years ago in the ER I was told I had Emphysema via a chest x-ray and a diagnosis of hyper inflated lungs. I made an appt. with a pulmonologist, had 3 or 4 PFT within the span of two years, all were normal, CT scan apparently did not show anything and in 2014 was told by the pulmonologist to stop worrying and live my life. I immediately quit smoking and started daily walking routine of at least 40 minutes.
Fast forward to the last two years. I am noticeably more tired, profoundly tired, a feeling that does not improve with added rest. Whenever I mentioned this to my primary doctor the answer was basically I was getting older. Then, last fall I got sick with COVID, horrendous cough, but, since I did not have a fever nor other symptoms, my primary doctor told me no need to see him and prescribed cough syrup which helped. By November of 2023 I was still feeling run down, and ended up going to urgent care for my lingering cough, shortness of breath and feeling sick. They took an x-ray and the doctor came out, she held my hands and said "you have COPD, hyper inflated lungs and a partially flattened diaphragm."
I immediately called my primary doctor who ordered a PFT, The results of the test surprised me in that all numbers were in the normal range except the DLCO score which at 70 was noted as "mildly reduced". The results of that PFT in NO WAY resemble my daily lived experience.
So, here is my dilemma and my question. I recently had an appt. with a pulmonologist who was extremely arrogant, not interested in my questions which I had carefully prepared, especially regarding the difference between PFT, CT scan done for lung cancer screening and chest X-ray. He accused me of being overly concerned about the numbers on the PFT, and why was that? When I asked about the CT scan I found out he had not looked at it, and once he called it up on the computer glanced at it and just said, it's fine. When I asked about the chest X-ray he asked me what I knew about the qualifications of the people at urgent care who interpreted the chest x-ray.. The copy of that x-ray was in the records.
So now I am stuck.
My primary care doctor quit the office and the office closed. I found a new doctor who is a primary doctor as well a board certified pulmonologist. He cannot see me until August, when I have an appt. I live in a mid size city with a university. I called their pulmonary health clinic but, no one will be able to see me until July because based on the PFT this is no urgent matter. In the meantime I am anxious, and my breathing seems to be getting worse all the time.
Do I wait until August? I am feeling terrible and scared so it feels quite a long time off. I have tried to find a pulmonologist by offering to self pay for a consult, and again, no luck. Does anyone in the community have any suggestion regarding a better way to get a diagnosis in a more timely matter? Again, I am able to self pay.
Finally, I am scheduled for an echo cardio at the end of April to get an idea of cardio issues. I also had a sleep test where I was diagnosed with mild sleep apnea. Waiting for my C-pap now. I had wondered if a Bi-pap might be more appropriate but, apparently I have to go the CPAP route first to see if it helps.
The thought of nothing being done to help me understand my situation and/or help alleviate symptoms seems daunting. Any ideas?