This was incredibly deflating news. Yes I could probably fight for it. But have I mentioned I’m exhausted? Mentally drained? Still working a 40+ hour job? I did notice on the Mayo Clinic’s website that my insurance IS accepted at their facility in Florida. Okay. I could ask my local nephrologist for a referral there.
But then… wait a minute… If I’m going to have to travel that far… what are the chances? Holy shit. The doctors in Pennsylvania with whom I’ve been emailing—THEY ARE ON MY FREAKING INSURANCE PLAN!!!
Saturday morning, I quickly sent an email to both doctors, explaining the situation with my insurance, and asking if they would consider treating me there. I said if nothing else, I might be a helpful “n” in their research, being relatively young and relatively healthy.
Then next morning, ON A SUNDAY NO LESS, Dr. A emailed me back, saying she had spoken with Dr. C, the other doctor, and they would be happy to work with me. She said their case manager would be calling.
Whoa. I was stunned. I emailed them back telling them that was the best news I had gotten since this whole thing began.
In the meantime, I got a message from the hematology doctor to whom my care would be turned over once my hematologist left the practice. This was the doctor who said he wouldn’t use the recommended treatment protocol if he were the one to treat me. He said he was in strong agreement that I go to the Mayo Clinic, since they were a “center of excellence.” [Translation: it gets me off his caseload.] He asked if I was interested in pursuing that option. I told him that they weren’t on my insurance but that I had been communicating with doctors in Pittsburgh, and they were willing to see me.
He asked who and where they were. I told him. He asked if I have family in the Pittsburgh area I can stay with. He asked me this twice. I told him that’s not a concern. I wanted to say, “I’m 51. I can manage a freaking hotel room by myself, thanks very much.”
Then he says, “What about Mayo Rochester.” Yeah, checked them. Not covered by my insurance. “What about Baylor University? Or University of Colorado?”
Now… had I been speaking with this doctor in person, I would think he hadn’t heard me. But this was in written form, and since he’s a doctor, I’m going to assume he can read. I already told him I had a place to go. Why is he throwing out all these other random places for me to look into? He’s probably lucky this WAS in written form and not face to face because at this point, my patience with this nonsense is non-existent.
I said, “I don’t want to go just anywhere. If I’m going to have to travel [“since no one here will help me” was the implied message], I’ll go where someone has experience. I have no way of finding out who/where those people are.”
He said he would look into it and get back to me. I said I would appreciate that as it’s always good to have a plan B. Well… it’s been nearly two weeks since that exchange, and I’ve heard nothing. Should I hold my breath?
A few days after the PA doctors said they would work with me, I got an email from their case manager, and later in the week we spoke on the phone. She said the doctors and she were astonished that no one here would help me.
Yeah, tell me about it.
She said Dr. A is EXCITED to work with me–that this disease is one of her passions. Oh my god, THAT’S what I am looking for! Someone who actually wants to help me.
The case manager was trying to arrange for a video consultation to avoid my having to fly out there only for that. I told her if she could do that, great, but if not, I’ll will definitely fly out. Whatever was going to speed things along. After the consult, I would go out one week, get the infusion of Rituxan, return home, then go out again two weeks later for a repeat infusion. She wasn’t sure how long I would have to stay each trip and said she would look into that.
And then coronavirus happened. And everything stopped.
Low, Low, Low 