Ajtorres12

Thank you cindy for the reply, you are right on point. My drs here dont know what to do with me so far. I believe I have had This MPN since 2000, I did not have any.major problems until 2010 when a blood clot in my portal vein caused the death of my small intestines. That's when all my health issues showed up. I will definitely look into the VW. Like I said before ocology wants to put me on some sort of blood thinner to help reduce the clotting risk but the varicees in my esophagus and stomach have  the drs scratching their heads. My platelets have actually been slightly low for the last few years dr thinks it's my spleen absorbing all the extra platelets and that's why my spleen is triple it's normal size (same lump from 2000). Thanks again for the info I will keep reading 

Thank you allenH. For your response, I am currently in a limbo state as far as doctors. Stanford liver dept has handed me off the the oncology dept. Oncology wants to put me on blood thinners and try and perform ANOTHERr tips procedure to help relieve the high pressure in my system due to the thick blood. I am also in the care of a nutritionist to help me put some of the 60lbs I lost when they took out my small intestines. I was about 190 before the surgery got down to 130 and now am starting to put some weight back on (up to 150 now). A small positive step but positive nonetheless. I have been reading everything I can about MPN and leukemia there is so much info out there its overwhelming. As far as TIPS is concerned in 2010 and again in 2013 drs did the tips but within a few days it clogged up again. The last time it was done I passed away and had to be mediflighted to San Francisco to save my life. I talked to the dr that did the tips 2 weeks ago and he said is his opinion it's best to not do a tips again. And I agree with him. The only thing the drs agree on is that I am very complicated and they don't really ln now what to do with me. 

Hello, my name is alex and I was diagnosed with ET a year and a half ago. I have probably had it since 2000 but my GP did not catch it. I had a lump on my left side under my rib cage that felt like it was not allowing food do digest. Doc told me to lay off fried foods and protein shakes. And add some metamucil to my diet. It helped with the the "full" feeling but was only masking the real problem. .fast forward 10 years and I developed a blood clot that killed my small intestines and caused me to get septic. For 5 years Stanford hospital here in nor cal was stuck on cirrhosis of the liver causing the clotting and tried to give me a liver transplant twice (I was denied due to my low body weight). Then in early 2017 a different doctor tested me for clotting issues and found Jak 2 mutation which led to my  MPN diagnosis (ET).  I had the bone marrow biopsy in early 2018 and it showed no leukemia yet. But they said its inevitable due to the overproduction of blood. Just a matter of time. I had problems with internal bleeds of the stomach and esophagus that makes blood thinners very high risk to take. So I'm stuck for now letting my body try and heal itself with zero drug interaction. Just keeping an eye on blood work for any big changes. I'm still working as an auto mechanic and living life. 

Anybody have info on jak2 positive mutation. With low platlet counts and low (within standard range) rbc and wbc and hemoglibin hermatacrit values. Im waiting on a bone marrow biopsy results. Possible PV??? Why the low counts if the bone marrow is always "on"???