01: Polycythemia Vera Diagnosis, PV Reporter, Day 1, Doomsday or Living with a plan?

01: Polycythemia Vera Diagnosis, PV Reporter, Day 1, Doomsday or Living with a plan?
MPN Chronicles

 
 
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MPN Chronicles Podcast

This podcast will cover the PV journey I endured since day 1 of diagnosis at the Mint Hill Urgent Care, the days spent with chest pain that felt like a heart attack was “coming soon.”  I will discuss my trip to the Emergency Room and the frustration that followed in trying to get an appointment with a local hematologist.  It was day 2 with PV when I realized “I am going to become my own advocate” or get swallowed up by our crappy health care system……not to sound cynical but that was my experience early on.

My hematocrit (HCT) was the highest they (the ER staff) had ever seen at 69, that didn’t sound like a good thing.  For the full story, tune in to the Podcast, feel free to leave comments after.  Episode 02 will be an interview with an MPN specialist, followed up by the continuation of my story.

Living with PV – 9 Year Anniversary

Today is my 9 year anniversary “Living with PV” and I wanted to celebrate it by doing something special for my readers, friends and supporters.  Whether you have PV, ET or MF you may find elements in my story that you can relate to and perhaps pick up a tip or two along the way.

The most important take away should be – LEARN about your MPN, treatment options and BECOME YOUR OWN ADVOCATE.

Although the first several years with PV were very trying times for me, I can say now I’m in a much better place and feeling better than ever!

Note:  This podcast series in not intended as medical advice in any way.  You should seek assistance from a MPN specialist.


 

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."

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