I'm a 54 year old nurse, wife and mother, and I was diagnosed with portal vein thrombosis 13 years ago. It came on suddenly over a 3 day period with excruciating abdominal pain and weight gain of 15 pounds. After I was diagnosed with polycythemia Vera, they diagnosed the portal vein thrombosis. Due to this being so rare it was difficult for my doctors to diagnose. I was started on aspirin, and due to the portal hypertension I had esophageal varies. My GI doctor banded the varies as a prophylactic measures. I did fine for quite some time until I had a GI bleed. I was taken off the aspirin and after being off aspirin for 1 year I suddenly developed 2 more clots the men's enteric vein, the splenic vein along with the portal vein thrombosis. These clots were accompanied by excruciating pain again, which I knew was the same pain I experienced before with the portal vein clot. I then was put on Coumadin and have been taking Coumadin for the past 7 years and will be on it for life. I have been doing well over the last 7 years, but continue with ascites which is a daily struggle. I have had people ask me if I am pregnant. I try my best to get my rest and also to exercise. I have two abdominal hernias, so my abdomen looks a little strange. But, for me as long as I am feeling well I try to forget about all the problems I have in my abdomen. I guess the main thing is I am thankful to be alive. Has anyone else been diagnosed with polycythemia Vera and have clots, taking Coumadin? Jlynbeach
Jlynbeach Jlynbeach
51-55, F
1 Response May 8, 2012

I’m sorry and I really sympathize with you about your disease, because my father today was diagnosed the same disease. He has something common with you. Also my father was treated from Policitemia rubra vera since 2001. In addition, my father had cancer of the prostate in 2009 when radical surgery was made and prostate was completely removed. Since then for prostate was treated (in the period 2009-2010 (one year)) with hormonal therapy, 2010-august 2012 only controlled for PSA (a marker of prostate cancer) which in that period was lower than 0.04, and from august 2012 (because PSA rose to 0.772) he is again treated with hormonal therapy. Shortly I showed you my father’s disease history due to the fact that I’m still withing the results for the origin of PVT (in the moment there are two main possible causes first is policitemia rubra vera and the second is (I’m afraid even to write) cancer).
For policitemia rubra Vera the only treatment up to now was aspirin in daily doses, and depend of the blood test result he was taken blood (from him) In hospital (0.4 l). in the period 2001 – 2009 usually on every 2 months blood was taken, in the period 2009-2011 usually on every 3 months, and since the beginning of 2012 surprisingly blood recover in the most of the way and blood was taken once on six months.
Ten days ago my father had a fever, pain in the stomach and asip (liquid in the stomach). Because in Republic of Macedonia now is winter we taught that is influenca, but the asip showed that is something with the liver. So today I was told that is working about PVT.
So, I think that I don’t have time to wait.
I was wondering several things:
• if you were in the hospital when PVT was diagnosed,
• Which were the symptoms (for example pain, temperature …)
I’ll be very glad if you share your experience. Hering you asap. My cell phone number is 0038971264510. If you have any information that you think are important for me now call, write or… Thank you