Polycythemia Vera Pre-diagnosis Patient Report

Publisher’s Intro

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.


Terry’s Story

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

rosacea from polycythemia vera

The “PV Red Face”

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.

chest pain from polycythemia vera

chest pain

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.

phlebotomy in polycythemia vera

phlebotomy

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

therapy brings hopeI 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.


About David Wallace

Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward - "educating the patient is essential, so the patient can guide their physician to meet his or her needs." PV Reporter is a comprehensive resource hub giving visitors vital tools to become "empowered patients."

Comments

  1. Thanks for sharing. This reminded me of my early diagnosis days, a time when there was little information available. I agree that laughter is the best medicine.

  2. David Wallace says:

    Appreciate your comment Audrey, I think we are fortunate now to have so many excellent resources to learn more about our MPNs. I hope to gather more patient stories in the near future….if any of our readers are interested in sharing your journey drop me a note and let’s discuss – http://www.pvreporter.com/contact-a/

  3. Sondra Ross says:

    Thank you a million times for the PV Reporter. I just found it and am very excited to learn more. I am a survivor of PV DX in 2004. I too am having many ups and downs with this disease. Keeping up is the major one, hair loss and giving up my vanity (ha ha) is another of the many. I take HU for treatment beginning with this in 2010. Prior to that it was aspirin and PB’s. Would like to learn if Rux. med can help my spleen size, so I am investigating more. go to Dr. Jerry Sprvak at John’s Hopkins for consults. have a great oncologist, Dr. Dar at Va. Cancer specialist.
    Currently, getting more depressed with all the stress of this disease.

  4. So glad to find your page as a newbie waiting for my Jak 2 results anybody know why it takes so long?

    • David Wallace says:

      Glad you found us Birdie, hope your find PV Reporter informative. I know my hematologist had to send the JAK2 test off to an independent lab and it took about a week to get results. Wish they had a faster process too. Good luck and let us know how your tests turned out.

  5. Mel Vos says:

    I was diagnosed with PV 5/31/16 when my HCT tested 62.0, the confirming JAK2 test came back positive late 6/2/16 and I my first phlebotomy was done at the local blood center at 10:30 AM, 6/3/16. The only symptom was reddish face which we thought was sunburn since it was spring/summer and was outside much of the time. My hematologist suggested I may have delayed recognizing my having PV due to my regular blood donations (Pint every 8 weeks as allowed).

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