Hi Ruth! I assume you have been to Vanderbilt by now but I know how that can go. Appointments being changed at the last moment. Any news yet on your situation? I will try to check in ASAP. I know all of us here have our good days and bad days so connecting at times is a hit or miss. I’ve had a bad week, LOL instead of a bad day. Hopefully, I will get back here before another week has lapsed.

Hi Faith2, thank you so much for sharing your story with me. It’s very encouraging to know I’m doing what needs to be done. I’ve had the GI bleeding as well with a number of trips to the ER and being told to go to the GI each time. The GI found nothing in 3 years of dealing with it. The only reason I found out about the MPN was because a GP in another state saw the importance of sending me to a Hematologist. Fortunately the Hematologist discovered Anemia which I got two infusions for. Coming back to my home state, facing two GP’s and an Oncologist totally disregarding the test results has been more than frustrating! I just hope that it hasn’t been life threatening as well. We shall see with what Vanderbilt says. In the meantime I’ll work on getting ready for the results and next steps continuing to be my own advocate.

Thank you for your tips and encouragement. They’re worth more than gold! Have a wonderful weekend as well! ♥️

Hi and welcome! I see you have been put through the mill with your diagnosis just like me. You keep on being your best Advocate! That’s what got me a diagnosis. I researched it myself, gathered up all testing, and when my PV landed me in the ER due to excessive GI bleeding, i literally yelled at an ER doc, LOOK! I know I have this. Humor me and send me back to a Hematologist! Thankfully, he listened but I think it’s only because I had all the test results, he was worried about the GI bleed, and he said my skin looking like I was sunburned in the middle of Winter wasn’t a good sign.

I was under the care of a Hematologist in 2017 who monitored me for two years due to blood counts that were out of control. He missed it even when my bone marrow biopsy had results that were staring him in the face, this patient has PV!

You should get some excellent care at Vanderbilt. Another helpful tip for diagnosis, if you have a loved one that can go into the doctors with you and tell them what they witness going on with you. My husband did that for me and that was helpful as well. Wishing you the very best and have a wonderful weekend!