Fighting Back

March 6, 2020

Another four-appointment day: lab, shot, hematology, nephrology.

First, some good news. My bone marrow biopsy was negative. I wasn’t terribly concerned about it but the results hadn’t posted online so I was getting a little anxious. But the hematologist assured me that the bone marrow biopsy and the PET scan were negative. Yay!

I was hoping we were inching ever closer to actually DOING something about this kidney disease. Here were my thoughts on the treatment: The doctors in Pennsylvania were very willing to work with my doctors here. They would provide the treatment regimen, and my providers here would implement it.

Sounds reasonable to me.

Except…

None of my providers here would help me. No joke. I was the hot potato no one wanted (youngins, look it up). My nephrologist is saying it’s a hematology problem. The hematologist is saying it’s not a blood or cancer issue. And that they don’t have the experience. And that they don’t know how to “measure” if the treatment is working. (Hell, even *I* knew that one—it’s the protein in the urine, yo. Which I told her.)

Then she dropped the bombshell: she’s leaving the practice. I should have known. If I actually like a provider, he or she tends to leave. BUT it didn’t sound like she was going to do much more for me anyway.

She also said that she talked to her colleague, Dr. T, to whom she would be turning me over for the follow up of labs and the EPO injections. She said she didn’t think he would even be able to treat me there (due to the not-cancer, not-blood disorder thing), but if he did, big IF, he wasn’t going to use the treatment that the authors had done the research with–you know, the treatment regimen that had showed some success? (And keep in mind, they weren’t the ONLY people to successfully use the Rituxan and prednisone combo. There were others.) Instead, he was going to treat me with other chemo drugs, because… why?? She didn’t have a good answer for that.

Okay… so the nephrologist won’t help me. The hematologist is leaving but wouldn’t have helped me anyway. The doctor won’t treat me with the recommended protocol.

NOW I’M PISSED. Beyond pissed! Infuriated! This whole situation is fucking ridiculous. First off, the nephrologist dumps it in MY lap to find a place to treat me. What the hell? I’ve been a health care provider for over 25 years, and I have NEVER told a patient, “Hey good luck, hope you can find someone to help you.” That’s not how it’s done. Secondly, Rituxan is a familiar drug to oncologists and hematologists. All they need to know is how much and how often. I can get that information. And lastly, I’m going to be this Dr. T’s guinea pig? He doesn’t have any experience with this disorder so he’s going to give me chemo drugs he’s familiar with even though they’re not indicated? Yeah, I think not. Someone’s gone mad here, and today, anyway, I feel pretty certain it’s not me.

So.

I had already come to the conclusion a couple weeks ago that the nephrologist and I were going to have a discussion about this. I only hoped I could find the right words and not get angry about the whole situation. Because I was thoroughly disgusted. The nephrology appointment was later in the day. Since my last visit when she upped my lisinopril, the protein in my urine had decreased significantly. Nowhere near normal, not by a long shot, but at least things were heading in the right direction.

She asked how I had fared with trying to find an out-of-state provider. And that was the opening I needed. I told her that SHE needed to make those calls. That it was medically irresponsible to put that on me. That I have NEVER done that to a patient. That NO ONE will return a call to me. NO ONE!!—I’m a nobody. Still waiting for a return call one month later. SHE’S the specialist, she’s the one with the contacts. They WILL return a call to her.

And I was very calm. But very direct.

And her immediate response was to get defensive. “I can’t FORCE someone else to see you.” Duh, what? Why would you have to force them and why would you think I thought you could? I said, “Well if you call someone and they won’t see me, then you call someone else. And if they say no, then you call someone else. And you keep calling until you find someone who will. Someone with experience.”

I told her, “I’ve been patient. But I’m not going to be patient anymore. It’s taken nearly a year to get a diagnosis. Now I have one. It’s time to move forward.” Again she got defensive: “Well you haven’t been my patient for a year.” <Insert a giant eye-roll here.> “That’s not my point. My point is, we have a diagnosis. There is a treatment plan. It’s time to put it into action.”

I don’t think she expected any of this from me. At the last appointment, I was pretty sedate after hearing the diagnosis and her grim prognosis. But today? There was a rift in the space-time continuum, and *I* was going to be back in charge. You want me to be responsible for my own care? Great. Here’s my first order: MAKE. A. CALL.

She said she wanted to see me back in three months. “Fine,” I said. “When will I hear back from you about a referral?” “I’m not going to give you a time frame.” “Well, I’ll be calling.”

It was so interesting when I left. Nothing had changed. I still had the same diagnosis. I still had no concrete plan in place. But yet everything had changed. I wasn’t that gob-smacked patient anymore. I wasn’t stunned into silence. I was back to my mouthy self. And my mouthy self tends to serve me well.

Hemoglobin: 9.8
Protein in the Urine: 4874

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