by David Wallace
As a certified, red-blooded JAK2 positive Polycythemia Vera (PV) patient, I have always been fascinated by the events leading up to a PV diagnosis.
By sharing our stories, perhaps we offer “a dose of comfort” to the new or recently diagnosed. When they read of struggles that other patient’s experience, all of the sudden there is an “ah ha moment”……hmm, maybe I am not alone in this (insert nasty expletive).
Terry’s story hit home for me as we share numerous symptoms and the problematic early rounds of phlebotomies. If you are a newbie, trust me it gets easier as one gets used to the procedure and you learn your own techniques to prepare. For me that includes drinking plenty of water and taking an extra aspirin on the day of phlebotomy (ALWAYS check with your physician first on the aspirin). Click here for more information on phlebotomy in PV.
First, my Father was diagnosed with PV in late 70’s after complaining of back ache to his Doctor. His GP told him he had Leukemia and that he would undoubtedly die! Thankfully, we have come a long way.
Latent PV and a Hodgepodge of Symptoms
I believe, and my Hematologist agrees, that I have probably had PV for over a decade before a DX (diagnosis) was made. My health issues started around 1994 with Hypothyroidism, then in 1998, I was diagnosed with a Parathyroid Tumor that caused dangerous levels of high Calcium. Had a parathyroidectomy immediately after diagnosis. The fatigue continued as well as subtle symptoms creeping up; headaches, edema, leg pain, orbital pain and discoloration (dark eyes), stomach and digestive issues. The strange and somewhat humorous symptom that I had for years, was when I accidentally cut myself, my blood would be thick and had the distinct odor of a wet, rusty tin can! Of course, my “red skin” which I always assumed was because of my Native American heritage on my Father’s side, turned out to also be related to PV.
My 20 years of chronic Squamous Cell Skin Cancers is, I believe, (my first Hematologist agrees) also part of this MPN. No one in my family has ever had Skin Cancer of any kind.
Let’s See if this Goes Away
In 2009, after almost two weeks of terrible radiating chest and neck pain (I am one of those “see if it goes away” people) I called my GP whom I had been seeing for my various complaints.
He called me at home one morning to see how I was feeling and I caved in and told him what I was experiencing and that I had never felt so ill in my life and that every little step was an effort. He insisted that I go to the nearest emergency hospital. Of course, Emergency suspected a heart attack or stroke since I had experienced this terrible chest and neck pain. My blood pressure was through the roof. They took all the necessary tests, EKG, chest X-Ray, blood work.
Traumatic Early Rounds of Phlebotomies
I was immediately admitted to the hospital for more tests. My team included a Cardiologist, Hematologist and GP. The blood work showed that my Hematocrit level was 59.7. They immediately started the phlebotomies, the first was terrifying. My blood was so thick the nurses couldn’t pump it out of me. Finally, when they were able to get the blood flowing, I went into a convulsion wherein my appendages started to curl-up and disfigure and my blood pressure plummeted. Very frightening experience but I made it through the first round. What followed was 4 days of daily phlebotomies and rehydrating and running necessary tests for any heart issues. After being put under the care of a Hematologist, I was released and had to follow-up with weekly phlebotomies for 3 months until my levels were within a safe range.
Presently, because of not being diagnosed for over a decade, I have Cirrhosis of the Liver due to Iron Overload.
My iron level is extremely low, which causes constant fatigue and heart irregularities, shortness of breath at times, night sweats, chronic insomnia, eye disturbances and blurred vision. I also have chronic allergies due to the high histamine levels that goes along with PV.
Of late, I have noticed that I have tremors on my left side, some days worse than others and I worry about Parkinson’s…something I need to discuss with my specialist at my next appointment end of this month.
My current hematocrit is around 35 and I seem to have a little more energy at the moment. I only require phlebotomies once every 3-4 months and at this point, only take aspirin. I cannot take the current chemo as it causes more squamous cell cancers.
Learning to Live a New “Norm”
PV has definitely affected my life in every way. I no longer have the strength and endurance that my strong, body builder’s body once had; flying is very unpleasant and painful (legs) which keeps me from flying to 3rd world countries that I once enjoyed. I have terrible disequilibrium which rules out the ocean cruises. It is very difficult to “keep up” with my siblings and friends because of my fatigue and weakness.
Therapy Shines the Light on Hope
I have to be honest and deliberate in saying that after dealing with all the psychological issues that go along with this disease, depression, the feeling of inadequacies (due to my body failing me), I found a wonderful female therapist to help me work through the anger against my own physicality (not helpful) and depression. After seeing her for 2 years, I am starting to be less angry at myself and more loving, the laughter is slowing coming back and I am trying to embrace the new ME. I am hopeful for my future.