So I canceled the appointment in September at Dana Farber and now had decided to see the most respected doctor in the mpn community, Dr. Richard Silver. I knew I would get an accurate diagnosis and treatment plan. I also hoped I would get a referral to a competent local hematologist. Clearly I needed a new doctor!
Just after the new year my husband and I boarded an Amtrak train to NYC. Driving in the city is a real hassle for those who don't do it often so taking the train and taxis seemed the least stressful way to travel. We were able to get a greatly discounted rate on the ticket with an advanced purchase and planned on making a day of it.
My appointment was scheduled for mid afternoon. There was bloodwork to be drawn first. And we were strangers in a strange land. So that all means arrive early, scope out the logistics to find our way around the hospital, then hang out in the hospital cafeteria waiting for my appointment. New York Presbyterian Hospital is undergoing renovation work. New clinics are being built and patients still need to be seen and treated. Offices and labs are on the move. Walls are built and hallways changing. I was happy we arrived early.
The best doctors seem to travel in packs, with a posse of young doctors eager to learn their craft. Dr. Silver is no exception. After the bloodwork I was called in by Nurse Ruth, Dr. Silver's assistant. Nurse Ruth asked about my symptoms and list of medications. She had immediate access to my CBC results and pulled that off the computer, handing me a copy to review. My platelets were around 770k, my htc 49 percent and hemoglobin 15.5. All counts were going up.
Dr. Kurikose saw me first. He was accompanied by another intern whose name I don't remember. Dr. Kurikose reviewed my symptoms and meds and listened as I described my experiences with the hometown hematologists. Then Dr. Silver arrived. My history was reviewed again and Dr.S immediately commented that my medications were all wrong! He said I should never be on a diurectic for high blood pressure. He felt that was contributing to the elevated hematocrit. He wanted to do some more tests. these tests were critical to making the distinction between ET and PV. He ordered an erythropoietin test to measure the amount of hormone produced by the kidneys that is responsible for turning stem cells into red cells. And a red cell mass study to measure my true hematocrit. This specialized test can only be conducted at large institutions like New York Presbyterian. It is a very select test critical for an accurate PV diagnosis, but not required by the diagnostic criteria established recently by the World Healt Organization. Dr. Silver has taken issue with the WHO and eagerly offered to send me his research article on his opinion.
I knew I was in the right place!
I agreed to come back in two weeks for the additional tests and would see Dr. Silver again in about a month to review the results. Oh there was one more detail. Just like a well seasoned salesman, Dr. Silver offered at no charge to me a holiday special to measure my Jak2 allele burden as part of a study he was doing with Dr. Cross in England. My blood would be sent to his lab where it would be analyzed. The goal of the study is to determine the course and progression of MPNs by tracking the Jak2 over time. Sign me up! Knowledge is power!