I have spent quite a bit of time describing my journey down the mpn fast lane. By the way dear reader, I hope you picked up on the irony of the blog title. Mpn are very slow growing blood cancers. They are not the fast moving acute sexy leukemias that seem to get hematologists excited. In fact I think that might be why mpn patients receive o much inadequate and inappropriate care. Doctors don't see many mpn patients in the course of a career and quite frankly I believe they consider us boring.
So mpn patients need to become our own advocates. One of the specialists my general practitioner referred me to was a neurologist to evaluate my headaches. I must say this guy knew more about chronic blood disease than hematologist number 2! The neurologist ordered MRIs of my head and neck which were normal. However as I explained to him what the disease of ET was all about he seemed to have an intuitive understanding of chronic blood diseases. He immediately recognized my symptoms as vascular, not neurological. He too suggested the diuretic was depressing my blood volume. And he wondered why my hematologist couldn't understand this. Ultimately the only thing the neurologist offered me was a prescription or verapamil. This med is used for classic migraines, which he diagnosed, and also for angina and blood pressure. The neurologist told me do not do aerobic exercise because my blood is too thick and not delivering enough oxygen to my brain. He also advocated lots of water to stay hydrated. He encouraged my visit to Dr. Silver. So this past August when I saw the neurologist I gave him an update on the events of the past year. I told him how good I felt and he deserved some of the credit just because he validated my suspicions and encouraged a consultation with an expert in the field. He said something interesting that my case was a perfect example of what is wrong with medicine. Doctors are not paid to solve problems. They get paid to order tests and perform procedures. But here I was, I had gone against medical advice by refusing the chemotherapy and phlebotomies the hematologist wanted to do and instead I sought out another opinion. In the end I had a few more tests, but the problem was solved by stopping one medication, taking another and drinking lots of water. Doctors don't get paid for that. My health improved and I avoided chemotherapy!
My general practice er was equally impressed. He seems to be the last one to know my health status but I do keep him informed and current with my labs and reports. He wanted to know how I found Dr. Silver the expert hematologist. He said I was not the only one of his patients to have a bad experience with hematologist number 2. I think this might be unusual, but he put his hand on my shoulder and simply said You dd the right thing,