I canceled the appointment with the specialist at Dana Farber Cancer Center after the results of the bone marrow biopsy showed nothing urgent to cause alarm. The report appeared to confirm a diagnosis of essential thrombocythemia. My next appointment with heme number two was in three months. So I set about gathering my medical records from all available sources and compiled a medical notebook to help me keep track of my new status as a person with a serious chronic illness.
The paperless medical practice my hematologist belonged to had a wonderful online patient record portal that allowed me to see my records and print them at home. This is a great feature for someone like me who is very organized and likes to be in control.
I also patiently developed a list of questions to ask my doctor about this disease. I cold find research papers and information on the Internet but this was all so new to me. I was determined to be an informed patient and a member of this team. I discovered some great online patient support groups with knowledgeable mpn patients from across the globe. This was going to be ok.
I arrived for my next scheduled appointment a bit early so I waited in the parking lot with my notebook and iPad reviewing my questions for the doctor. One of the nice things about this online patient portal is the ability to confirm my appointment and see what bloodwork has been ordered. I took the opportunity to take a peek while waiting. To say I was surprised is an understatement. I was not scheduled to see the hematologist, I was to see the nurse practitioner! This change had been made in the last 24 hours. I was angry! I waited all these months to ask questions of the doctor. I wasn't certain he would know the answers because of the rarity of my disease, but now, seeing a nurse practitioner, I knew she/he would not have the answers I needed! Again this was the second time this office had done the old bait and switch!
I tried to compose myself as I entered the office and approached the reception desk. Truly I did. The young woman was expecting me and greeted me by name. I asked her why my appointment had been changed from the doctor to the nurse practitioner. She gave me the very rehearsed line I had heard before about patients seeing any of the doctors, nurses, or physician assistants in the office. She assured me this medical professional could take care of me. I guess I lost my cool. I pointed out that this professional was not a doctor and I had waited three months to see my doctor, not a nurse. I wanted to see the doctor. She told me the doctor could not see me and offered to reschedule the appointment to the next day.
The next day I returned, more composed. My blood was drawn and I waited in the examine room for the doctor. He immediately asked me about the day before. I told him I was upset the appointment had been changed to the nurse. I had questions that I knew she couldn't answer. He said he didn't know why the appointment was changed but he could have seen me. That's not what I was told by the young lady at the desk. His next statement was the last thing I remember hearing. He told me I needed to be nice to the staff! I think he told me he changed my diagnosis to PV. When I asked why he simply said because I am jak2 positive. Then he suggested we try a phlebotomy or a little hydrea. When I asked why he said I kept complaining about the same things each time he saw me! He also said he could not say when or how but he could guarantee that I would have a thrombotic event at some time in the future! I hadn't had one and thought it was his primary job to prevent this!
Here he is chastising me, changing my diagnosis without adequate explanation and suggesting chemotherapy because i complained of symptoms! I vowed never to return!
As I mentioned during the months I waited for this appointment I researched all I could about MPNs and ET and I joined a few online patient support groups. It was in a patient support group I learned about an international patient doctor symposium in NYC, just a few hours away. The most respected and knowledgeable Physician researchers in the field of myeloproliferative neoplasms would be there sharing the latest information on treatment and disease progression. Patients I only knew by their online names would also attend. The conference took place every other year and this was the year. I had to attend! My husband agreed to go so the plans were set.
The conference was incredibly technical. Each minute was packed with brain numbing scientific information. Most importantly I met the people I knew from the online groups. This was priceless. While sharing my story with a listmate it was strongly suggested I see one of these experts for an accurate diagnosis and treatment plan