I am in medical hell in the middle of nowhere. This is long because I am upset and I just need to uh, let it go. I will not break into song.
tl;dr My doctors in Philly were amazing. My doctors in Kansas are completely horrible and I cannot understand why people accept this poor standard of care.
When I lived in Philadelphia, I had great doctors. I loved my primary care doctor. I'd been with him 12 years. I knew the doctors in his practice as well as the nurses and the physician's assistant. I knew their names and brought them cookies when I had whooping cough and was in there every frigging week for forever.
I didn't expect 24/7 contact with my doctors, but I could leave a question with the nurse (if he/she couldn't answer it) and I could also email them with questions about medication or tests, etc. This was not only true of my primary care doctor, but my gynecologist, my gastroenterologist (stomach bleeding from advil) and neurologist (migraines.) I had the same doctors (except for one who left for Mayo, damn him) for over a decade.
Now I am in Kansas and I cannot believe how patients treated. I have some very serious stuff going on. I am never allowed to talk to my primary care doctor. Never. You are required to leave a voice mail for her nurse (she does not ever answer the phone) and the nurse calls you back. When I was in the hospital, the hospitalist was screwing up some medications and I wanted to doublechek with the primary care doctor.
The nurse SCREAMED at me that it wasn't the primary care doctor's job to help me in the hospital. She has been nasty consistently since then. The doctor doesn't call or email with test results, the nurse does, and then acts like it's a massive giant burden if you have questions.
I talked to the doctor about the nurse and she said she just doesn't have time to call patients, even when they have questions. And that's just the way all the practices here are set up - the nurse is supreme gatekeeper and doctors have no contact with patients unless they are physically in the office.
These are not "I have a cold" questions. These are "I am having a bad reaction to this medication and it's causing me to drool uncontrollably, what should I do?" or .. "my blood pressure is 180/140, should I go to the hospital" questions.
This week, I saw a cardiologist I liked. He seemed really helpful and willing to answer questions. He knew my primary care doctor and said when we got all the test results back, we should have a conference call to talk about the results and continuing treatment. Great!
I was in the primary care doc's office to give blood and passed this message along. OF COURSE the nurse got it wrong. The next thing I know, I'm getting a call from the assistant saying that my primary called the cardiologist (why? the tests weren't in for a week) and the cardiologist NEVER suggested a conference call and that he and my doctor will talk amongst themselves and let me know the course of treatment. I will not be allowed to ask questions.
WTF Midwest. I started crying. I'm like - why would I make this up? Why am I not allowed to be part of my medical care and ask questions? I literally had just come from his office. I am not on crack.
Apparently, this is the way it is in Kansas. People keep telling me that it's Midwest nice not to question your doctor, or ever expect to talk to them, or have them explain test results. Again, I don't expect 24/7 with the doctor, but yeah, with major stuff, I'd like them to call me back.
Ironically, during this entire episode I have been sending all the stuff to my doctor in Philly. The last time I was in the hospital, I emailed him, he was on vacation. Not only did another doctor in his practice CALL me to find out what was going on and answer my questions (the Kansas doctor refused to answer questions) but when my doctor got back from vacation, he emailed me too and made several drug suggestions and had questions.
This is not a small practice, y'all. They are internal medicine at Penn, one of the largest medical centers in the country. They are busy. But they make me feel cared about, they don't get angry when I ask questions and I TRUST them.
I'm going to die here in fucking Kansas with this crap. But don't bother calling my doctor to let her know. You'll have to leave a message on the nurse's answering machine. You'll probably get yelled at for calling, because why would the doctor care about a dead person.
If you actually got to the end of this, you're a fucking saint. Or a masochist. Thanks for listening..