More mast cell grievances from Minnesota

My kidney still hurts. Removing the stones relieved the severe pain, but my mast cells are still spiteful from the surgery. I asked my urologist if I could try a mast cell stabilizer that targets the urinary tract. My hypothesis is it would decrease my kidney and ureter inflammation and consequently, I would collect less stones. My urologist said he hasn’t read any research supporting my claims.

Of course not. I taught him almost everything he knows about MCAS. Furthermore, I AM THE RESEARCH. Literally, I am a MCAS research participant. Am I supposed to jeopardize my body while I wait years for research to be published?

He asked me if anyone was managing my MCAS, which is the Minnesota way of telling me to seek help elsewhere. No, no one wants to manage my MCAS since my specialist left the state.

And then my urologist told me to piss off.

Okay, he actually told me to complete a 24-hour urine analysis. Another repeat test, another waste of time.

My desperation compounded when I learned Selena Gomez got a kidney transplant. If Selena, a multi-platinum singer, can’t save her kidney, I fear mine is also doomed.

Additionally, Selena’s friend gave her the kidney. I don’t even know how to ask my friends to bring me dinner. So doomed.

Find a new doctor, one might suggest. Unfortunately, the MCAS situation in Minnesota has gotten worse. As you may recall, the university stopped treating MCAS patients after my specialist left. The university recommended three doctors in other networks. Since then, all three doctors have closed their doors to mast cell patients. That sounds horrendous until you hear Mayo Clinic also refuses to see new MCAS patients. Apparently, Mayo Clinic is currently considering if they will see legitimate MCAS patients. Whatever that means.

Yesterday, I received a $500 hospital bill and a letter from the university, which will no longer treat me, requesting a donation to support its medical research. It’s a miracle I did not spontaneously combust.

One thought on “More mast cell grievances from Minnesota

  1. This is infuriating. I’m so sorry you’re having such a rough time. I keep hearing conflicting info on the Mayo Clinic and was hoping it wasn’t true. I cannot for the life of me understand why Mast Cell Activation patients keep getting attacked but I’m sure it has to do with money somehow or perhaps malpractice fears. Either way, it’s ridiculous.

    Liked by 1 person

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