Thrilled for Polycythemia Vera (PV) Diagnosis!
Publisher’s Note (David Wallace):
It’s rare that I will accept an anonymous patient story, just one other in 7 years. Starting back in October 2019, a gentleman who found PV Reporter at the top of a google search, reached out offering to share a “summary” of his story. We exchanged numerous emails, formed a friendly connection and I asked if he would share his complete story. He politely agreed.
Naturally, I offered a few “patient suggestions” after learning more about his life altering struggle. I empathized with his difficult journey and decided that sharing his story may very well help others who are yet to be diagnosed with polycythemia vera (PV) or are in the early stages. If you would like to share your story with PV Reporter, please drop us a note.
In September of 2019 I was diagnosed with Polycythemia Vera, a myeloproliferative neoplasm. I was thrilled and relieved to receive the diagnosis. Why would I be delighted to receive such a diagnosis? The reason is that I thought that I was dying. With the diagnosis of Polycythemia Vera, treatment options are available to help keep me alive.
I’m not sure exactly when the difficulties started. Polycythemia Vera has a slow, but insidious progression. As a 70-year-old man, I concluded that my increasing fatigue was due to long working hours and not sleeping enough. I concluded that increasing levels of fatigue were also due to getting older and not retiring when I was 65 years old. High blood pressure became a problem. I was confused because my blood pressure had been in the healthy range for my entire life. I am not overweight. In fact, I made it a point to be somewhat thin in order to make it easier for my heart to function. But my blood pressure increased to 155/90 for no apparent reason. I tried to convince my primary care provider that the readings were unusual for me and that I didn’t need medication for hypertension. After several visits to my primary care doctor, he told me my blood pressure readings were always high and I needed medication to control it. I was also told that it was unusual for a man of my age to not need blood pressure medication.
The fatigue continued to increase. When I went to bed at the end of the day, I felt as if I had not slept for three days. When I woke up in the morning, I felt as if I had not slept for two days. But I forced myself out of bed in order to go to work and act as if my health was okay. I became a good actor because no one seemed to notice that anything was wrong. It also became increasing difficult to concentrate. It was more difficult to get things done. The level of my fatigue was crushing me.
I don’t drink coffee. But I drank more and more cola in order to get through the day. I easily consumed two liters of diet cola every day. The diet colas seemed to give me a little relief. But the fatigue was unbearable and I began to feel that I was dying. I repeatedly told my primary care physician about my fatigue. Blood tests revealed that my red blood cell and white blood cell levels were high and that they had been increasing for several years.
I also told my primary care provider that I had begun to have strange visual experiences. I sometimes had difficulties with my central vision. After a few minutes, I would begin to see strange, but colorful patterns in my vision. The patterns would increase in size and then disappear from the visual field. Then, my vision would return to normal. The visual disturbances would last for approximately 30 minutes. The frequency of the visual disturbances varied. They sometimes occurred only once every couple of months. Sometimes they would occur several times per day. Fortunately, the visual disturbances were not painful. But they were terrifying because I didn’t know what was happening.
Blood Pressure Continues to Rise
My blood pressure continued to increase, even though I was taking prescribed medication. I could feel my heart struggling to circulate blood. My interest in sex became minimal because sexual arousal was minimal. I concluded that men who are 70 or older probably lose interest due to aging. In August of 2018, my blood pressure spiked to 205/100. I felt that I was about to die. I went to the emergency room of the local hospital and was admitted for observation and assessment. Upon release, I was told that my blood pressure was high, possibly due to excessive caffeine intake and dehydration. Blood tests again indicated that my red blood cells and white blood cells were high. I was told to follow-up with my primary care provider. I immediately stopped drinking diet colas. I erroneously concluded that caffeine use was the cause of my problems.
Primary Care Physician Puzzled?
My primary care provider told me that something was wrong, but that he didn’t know what it might be. Antibiotic medication was prescribed due to the possibility that the unusual blood test results were due to an illness. But blood test results continued to be troubling. I underwent CT scans and an MRI. I met with an ophthalmologist. Spots were found on my kidneys and liver. I feared that I might have kidney and possibly liver cancer. I feared that I might have a brain tumor. Fortunately, the spots on my kidneys and liver were benign. I also didn’t have a brain tumor. I was told that the findings were age-related and nothing to worry about. The ophthalmologist concluded that my eyes were okay, but that neurology might need to be consulted.
By August of 2019, I was desperate. I considered going to an emergency room and demanding I be admitted and evaluated until I was properly diagnosed. My blood pressure medications were almost useless. My blood pressure readings were now routinely 180/95, even with the medications. I could feel my body struggling to circulate blood, I was positive that I was dying.
Consulting Dr. Google – TV Ad Sheds Light
I began searching on the Internet for some answers. I entered my lab results. I found multiple ways that I might be dying. But at the top of the list was a disorder that I knew nothing about: Polycythemia Vera. I even saw an ad on television regarding the disorder. I ignored the ad the first time. But when I saw the ad again, I watched and listened carefully. I didn’t have all of the symptoms, but I definitely had some of them.
A Referral to Hematologist/Oncologist Brings Clarity with PV Diagnosis
I again met with my primary care provider. When he asked how I was doing, I bluntly said, “I think I’m dying!” He said, “What am I going to do with you?” I told him I had been a “boring patient” for many years but that something was definitely wrong. My red blood cell level was no longer “high.” It was “critical high.” My hematocrit was 60.2. My white blood cells were also high. Platelet counts were very troubling, too. I told him maybe I had Polycythemia Vera. He said he doubted that I had the disorder, but I probably had leukemia. I was devastated because I considered leukemia as being a death sentence. My primary care provider appeared calm as he told me that leukemia could be treated if I had it, and that I might have a blood disorder. He also said he was making a referral to hematology/oncology. I was terrified, but I wanted to know what was happening.
I arranged the hematology appointment as quickly as I could. When the hematologist met with me, he asked how I was feeling. I told him I felt I was dying. I could no longer restrain my tears. He examined my blood test results. He tried to calm me and said my laboratory results were consistent with Polycythemia Vera. I told him I was thrilled. I also told him why I was thrilled: I had a diagnosis and I could be treated!
Phlebotomy Treatment helps some PV symptoms
I have undergone ten phlebotomies. I take daily low dose aspirin. My energy level has increased dramatically. I am able to think clearly again. My interest in sex has increased. I no longer feel that I am about to die. My blood pressure has decreased dramatically. I no longer feel like my heart is struggling to circulate blood. A neurological consultation concluded that I have visual migraines without headache pain, a problem that can start later in life. And the visual migraine won’t kill me!
Some Challenges Remain
But some challenges continue. I was recently referred for a consultation with a gastroenterologist. I am waiting for an appointment. A bone marrow biopsy revealed that my iron levels are very low. I was told that I might be bleeding internally because I am losing blood. I asked the hematologist if the source of my “bleeding” is having phlebotomies. The hematologist recommended that I pursue the gastroenterology consultation to rule out other possible conditions. I will comply with the recommendation to see if there are other issues that warrant treatment.
I also know that what is needed to treat Polycythemia Vera can change as time passes. But for now, I am quite willing to undergo phlebotomies every few weeks and to take low dose aspirin in order to feel that I can continue to live. I’ll face other challenges as they arise. I recently celebrated my 72nd birthday. A few months ago, I wasn’t sure if I would be alive to have another birthday. But I hope to celebrate many more birthdays before I complete my mortal journey.