I've found that advocating for yourself is not approved of in all medical communities, and it's often difficult to know there is a bias against it without becoming, if only for a short time, a member of those communities. The dangers that can come from not being able to change doctors are great, however. For example, in my own situation, I was assigned a PCP who, though nice, had no knowledge of heart problems. When I discovered this, I wanted to change to another PCP with a bit of knowledge that would allow him or her to work better with my cardiologist and was denied. The excuse given to me by the hospital was that there were no other PCPs accepting new patients. About a year later, the hospital adopted a new policy. Patients no longer would be allowed to make appointments directly with their specialists, even if they had relationships with them for years. Whenever a patient needed to see a doctor, he or she was required to see their PCPs first and let the PCP "refer" them to their specialists if the PCP thought it was necessary. Not long after that policy went into affect, I started having odd symptoms. One of those symptoms was very low diastolic blood pressure (as in the 30s). I also was having GI issues. My PCP focused solely on my GI issues and had liver tests run. When those came back negative, she shrugged and said there must not be anything wrong with me. I asked her about my low diastolic BP. She told me to call ER and ask them what to do about it. I knew ERs hate those kinds of calls but called anyway. The nurse who answered my call told me to drink more water. No one connected the dots and suspected that I had a heart problem. A couple of weeks later, my heart stopped for the first time. Luckily, I was in a hospital being held for observation with a nurse at my side when it happened. After tests, it was discovered that I had an abscess in my aorta. That abscess had been caused by infective bacteria. I had endocarditis and I was literally bleeding out internally. Had I been able to see my cardiologist, there's a strong chance that he would have at least suspected this when he learned of my low diastolic BP and instead of spending 6 weeks in a coma battling endocarditis and the accompanying conditions, then 5 more months in acute care skilled nursing, with most of that time on a ventilator, my cardiologist may have put me on antibiotics before my heart stopped. I likely would have had to spend several weeks in the hospital and most assuredly would have had to have open-heart surgery to repair the damage already done, but most likely, the recovery would not have been as grueling if I'd been able to see my cardiologist when I felt I needed to see him or had a PCP who was more knowledgeable about heart conditions. I believe that as patients we must advocate for ourselves.
That is a horrific story.God definitely was watching over you.All the best.