My right kidney is flaring again. Through my research, all symptoms point to interstitial nephritis. I am in so much pain I can’t keep food down. My right kidney shows damage, but my kidney function is okay. Yesterday, I went to a new nephrologist, hoping for a protocol to manage kidney reactions and prevent more damage, but she is afraid of prescribing the recommended treatment, the treatment that I know works for me, steroids. She said steroids have side effects, and I laughed, because I know this firsthand. I tried to explain steroids are a necessity for many mast cell patients, and I tried to explain the connection between mast cell activation and acute interstitial nephritis.
Instead of trying to understand how mast cell affect kidneys, she launched into the same conversation I’ve had so many times with so many doctors.
Doctor: Who is managing your mast cell disease?
Me: No one.
Doctor: What about rheumatology? Immunology? Hematology?
Me: No one will treat me anymore at this university, since my specialist moved to New York. My immunologist refused to see me after I was diagnosed with mast cell activation syndrome.
Doctor: Well, what about Mayo Clinic?
Me: They don’t treat MCAS, because there is no agreed upon diagnostic criteria.
Doctor: Well, there has to be other doctors?
Me: The few specialists in Minnesota that are willing to treat MCAS patients beyond the first lines of treatment are in private practices and I can’t afford them because they don’t accept insurance.
Doctor: Well, can you talk to HR and your insurance to try to get coverage?
Me: No, you don’t understand. Those doctors don’t accept any insurance. They cost about $500/hour and I can’t afford that.
Doctor: Well, maybe there is a clinical trial you can enroll in?
Me: There are none.
Doctor. Let me look… there are a bunch for mastocytosis.
Me: I don’t have mastocytosis. That is a different mast cell disease. I have mast cell activation syndrome.
Doctor: Oh. Well, I’m sorry I can’t help you more. You really need someone to manage your mast cell disease.
There goes another $35 copay. Today, I am at home trying to manage my pain and reactions myself with medications prescribed by my PCP. It’s hard to have hope when doctors won’t or can’t take the time to learn. I don’t know if I will ever have access to adequate care, but I refuse to lose an organ, because doctors are not educated on my disease.