03: Learn Benefits of Becoming your own MPN Patient Advocate

Chest pain continued to worsen after 1st trip to the ER, 2 days earlier.  This was an immediate cause for immediate concern and a return trip to the ER on day 3 with Polycythemia Vera (PV).  Once admitted, they ran various tests, EKG, heart monitor, blood test and more.  When asked to rate my chest pain on a scale of 1 – 10, I told them it was a 10 and I needed a phlebotomy immediately!

The attending doctor told me “we don’t generally perform phlebotomy in the ER.”  To that I replied “So you can perform a phlebotomy in an Emergency, right doctor?”  I asked “don’t you consider this a life threatening situation?”

Please listen to the Podcast for all of the details leading to an important take away – If the patient speaks up and demands the necessary treatment we ALL DESERVE, it is far more likely to happen.

Hello and welcome to MPN Chronicles podcast with David Wallace, the PV Reporter. Episode 3, day 3 with PV, “continuing to learn the benefits of becoming your own patient advocate. Today’s episode is sponsored by Incyte Corporation.

As we pick up on my third day with PV I had one emergency room visit, finally made my own appointment with hematologist for the next day. But a big problem remained, I continued to have serious chest pains and fearing a life-threatening event with my hematocrit still at 69 as no phlebotomy had been performed yet and I could not make it another day the way I was feeling. I called my mother who was still alive at the time and told her I needed to go to the ER asap. She rushed over and drove me to the ER in a frantic frenzy. Once being admitted they continued to run more tests – an EKG, blood test, heart monitor and more. Again, my hematocrit came back 69.3, a small but critical 0.3 increase. When they asked me to rate my chest pain on a scale of 1 to 10, I told them it was a 10 and I needed a phlebotomy immediately. The attending doctor told me we don’t generally perform phlebotomies in the ER. To that I replied, so you can perform a phlebotomy in an emergency, right doctor? I asked, don’t you consider this a life-threatening situation. He finally agreed a phlebotomy was needed but saw the note in my record and said, I see you have an appointment tomorrow with the hematologist and they’re really better equipped to perform the phlebotomy. At that point I was beginning to get upset and said, I’m not leaving the ER until you perform the phlebotomy however you need to do it. He replied, we will need to draw blood from your hand. So, I didn’t complain although it hurt like hell as they squeezed the blood collection bag and repositioned the tubing numerous times to draw my thick, stubborn PV blood.I was told I had twice the blood compared to a healthy person. It was super thick and slow moving to boot. After a phlebotomy that took about 1 hour and 20 minutes to fill the 500cc bag and 4 hours total in the ER I was finally released and pleased that I got the phlebotomy I so desperately needed and demanded to get. I learn the importance of becoming my own advocate from day 1; first when I was forced to get my own hematologist appointment as my local GP was no help, you may recall that from Episode 1.And the takeaway from this episode is listen closely for key words spoken by medical staff. We don’t generally perform phlebotomy in the ER meant to me, they can do it. If the patient speaks up and demands the necessary treatment we all deserve it is far more likely to happen. From that point on I spoke up forcefully when the situation required and I never looked back to the quiet patient I was before PV was diagnosed.

I hope you learned something from detailing my PV journey or perhaps you can relate some situations to your own MPN story. Thank you for listening and stay tuned for Episode 4, where I describe an allergic reaction to a required test and the visit with my new hematologist.