Trying to remain positive when the unknown outweighs the known

Last updated: September 2023

Hi, I am a 56 year old woman, married with 2 children ages 30 and 26. I was diagnosed with COPD in my late 30's. I had a thoracotomy in my 30's due to a 9-inch bled in my lung. I am a former smoker, I quit 21 years ago and am a loss.

COPD and other conditions

I have so many health issues including a pacemaker, fibromyalgia, scoliosis, migraines, POTS, etc and most recently nystagmus and pulmonary hypertension. It is hard for me to imagine that at least some of the issues aren't related. I recently had a sleep study done and while my sleep apnea is very mild I apparently have severe hypoxia while sleeping - my 02 falls to 68 so I started using 2.5l of 02 while sleeping. I did very poorly on my most recent pulmonary function test. I watched my mom die in February 2022 from complications related to COPD.

Struggling with COPD

To say I am scared would be an understatement. I am looking for a new pulmonologist because since I am not ready to try the new "valve" he won't return my calls. I feel alone and afraid. I need a doctor who can answer some questions honestly about my disease and what to expect. I do feel winded most of the time now. I have requested a handicap placard for my car as well as a script to participate in pulmonary rehab and still nothing. I feel abandoned, alone and afraid. People don't want to discuss what's next but I would like to know what options I have because my Mom went to the hospital with 02 in the 70's and was put on a ventilator that she didn't want. I want to be able to make informed decisions and make sure I am doing all I can to live the best possible life with whatever time I have left. I am glad I found this group.

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