Monday, January 16, 2012
It is now August 2011. I have been coping with the concept of being diagnosed with a rare life threatening incurable disease for about six months. I am in denial and really not handling it well. My GP is not happy that I haven't seen a hematologist since February so he suggests I see another. The appointment is scheduled for a Tuesday during the first week of August. Late in the day for my husbands schedule. I am in the blood draw area with the phlebotomist/nurse answering questions about my health history and medications. She weighs me, takes my blood pressure and draws about 8 vials of blood. This practice runs a paperless office, scanning all records into the computer. There is no paper chart that I can see. I glance at the screen and notice my name with a doctor's name next to it. The doctor is not the one my GP requested I see. This is not the doctor who took care of my mother in law so many years ago. I recognize the doctor's name from the office website and remember that this guy joined the group two months ago, right after completion of his hematology fellowship. I asked the nurse if i was seeing the doctor my gp requested. She gave me what was obviously a standard line in this practice and said 'we have three hematologist, a nurse practitioner, and a physicians assistant. You may be seen by any of them during your visit.' I was furious! Another newbie. I thought about leaving and going home but i decided to give him an hour. I figured he couldn't do any harm. The first thing I notice is this guy doesn't make direct eye contact. He speaks with his gaze averted in a non-confrontational manner. I do know that he studied school psychology prior to becoming a doctor so I thought this behavior may have been a part of his counseling bag of tricks. He asks why I am there so I tell him about the ET diagnosis and my reluctance to have a bone marrow biopsy with just Novocain. He has the records from the first hematologist and tells me I don't have ET. He says I have PV, polycythemia Vera. Why I ask? Well you are jak2 positive. He then tells me I should get my name on a bone marrow transplant list before I become too old. It may take some time to find a match. He also wants to do a bone marrow biopsy. I am shocked! I am not surprised he would have a different diagnosis. The two are related and I do have symptoms of both. But no where in the limited research I have done did the research suggest a bone marrow or stem cell transplant as a standard treatment protocol. Quite to the contrary! I repeated that I would not allow him to do a bone marrow biopsy without some sort of sedation. We left knowing that this guy did not have a clue of what he was doing and knew even less about this rare disease. I planned to call the Dana Farber Cancer Center in Boston the next day. I desperately needed to speak to someone who knew what they were talking about.
Saturday, January 14, 2012
So I am trying to play catch up with my diagnosis during the past year in order to get to MPN current events. Let's see how far I get. After the bloodwork my GP ordered showed elevated platelets he told me to see a hematologist. The cardiac testing, echo cardiogram and stress test were both normal. My first appointment with the hematologist was somewhat uneventful. He was a very young doctor who happened to teach advanced placement biology courses before medical school so I thought he might be someone I could relate to. He was very nice and did I mention very young? Well my husband and adult son were with me for this visit. That alone was awkward because they never come to appointments with me. The heme looks over my CBC results that my GP had forwarded and compares them with the labs completed in the office. My platelets are definitely elevated, hanging out in the 650k range.the other blood counts appear to be normal. At the high end of normal. I am asked questions about symptoms and lifestyle habits. Do you smoke? No. Have you ever smoked? No. Do you have any itching after bathing? No. Unusual bruises? No. Nose bleeds or problems with bleeding teeth? No. But I do have chronic low grade headaches, tinnitus, and very heavy periods. I ask if any of that is related. No, he says. I mention that my GP said the hematologist would probably want to do a bone marrow biopsy . So I tell him I am a huge baby and do not want to do that. He says we can take a step by step approach and may not need to do that. He wants me to have another battery of bloodwork and come back in a month. He mentions something about a myeloproliferative disease as a possibility. I am beginning to think this doctor is not very interested in my headaches or any of my complaints. When I return he wants me to have a test for a genetic mutation called Jak2. I have read a bit about that and understand that it is an acquired mutation that is seen in myeloproferative diseases of essential thrombocythemia, ET and polycythemia Vera, PV. This test will take a couple weeks for results. In the meantime he asks if I have had a colonoscopy. I am scheduled for that this month. The weeks pass and finally I get a phone call from the hematologist. He is sorry to tell me that I am Jak2 positive. This alone confirms that I do have an MPN. Which one I ask. He thinks for a moment and say ET, yes that's it, ET. He would like me to have a bone marrow biopsy, t my convenience. He is going on vacation, so no rush. I am just short of freaking out. I do not want a bmb and ask if he can do it while I am having the colonoscopy and under sedation. Unfortunately no, his malpractice insurance wnt cover him outside his office. Can you do it in the hospital under anesthesia? No your insurance won't pay for that. But we can give you Valium to calm you down. That's what you think. I decide it is not convenient to have that bone marrow biopsy. No now. He is not concerned with my complaints of chest pain and headache. He just wants to drill into my bone. I am not going back! Five months pass and I am scheduled to see my GP again to check my blood pressure. Even though I am on two blood pressure meds it is still in the 130/85 range. My GP is not concerned. My bloodwork is similar to the past results with my platelets around 650k. I notice my hematocrit is creeping up to 46-47 percent. About 5 percent higher than the top of the reference range. I tell my doctor of my experience with the hematologist. That I do indeed have a hematological malignancy, ET, and the Jak2 mutation. My doc knows nothing of this. The hematologist has not shared this information. I tell my doctor that I am not going back and refuse to have a bmb performed with just a couple shots of novocaine. He suggests I see another hematologist. He assures me she is quite good. She also happens to be the same doctor who cared for my mother in law twenty years ago whe she had non-hodgkins lymphoma. I agree to see her. Next post, hematologist number 2.