I have PV and had a routine ultrasound to check my liver and spleen. I am waiting for a call back from the doctor to review the results.
In the meantime… has anyone ever gotten a report like this? Or heard of this?
“Absence of color and Doppler flow in the left portal vein, upon directed review present in 5/2022, probable thrombosis.”
I am concerned.
That sounds like an abnormality detected in hepatic vasculature. It says "probable thrombosis" which is one of the risks with a MPN (portal vein thrombosis). This is definitely something to follow up on with a MPN Specialist and a hepatologist. Your MPN care team can give you the best guidance.
Please do let us know how you get on and what you learn.
Thank you for the information. I do plan on following up with my MPN specialist.
Do you think this is something that happens with PV even if you are treating it? Could it be that I had not gotten my HCT under 42 yet? Or could it be something that is different with everyone no matter what you do, just like most symptoms of this disease.
I will let you know what I learn!
The treatments for PV, controlling HCT and antiplatelet meds, reduce the risk of thrombosis but do not eliminate the risk. The risks and symptoms we experience with the disease are intrinsic to the disease process. I think that you are correct to think that it is different for everyone with PV. We each have a unique MPN profile and need an individualized approach. Working with a MPN Specialist is the best way to figure out what treatment approach is best for you.
The additional complexity is that we can also experience unrelated medical issues that complicate our care. I refer to these as interesting health learning opportunities. I have several of those, Neurofibromatosis Type 1-brain tumor, atrial tachycardia, lipomatosis, and a variety of other issues. Things have been quite interesting in recent years. I made it my goal to be "The World's Most Boring Patient." Sadly, that goal remains elusive. I will have to keep working on it.
You will soon have the answers to your questions and can work out the best solutions. Meanwhile, try not to worry too much about things you can't control. Wishing you lots of medical boredom in the future.
Yes, I will. Thank you for your advice. It has helped me.
Update: They said that the ultrasound is not always accurate, so I had a Cat scan to confirm it before they started any treatment, and there was no blood clot. I am so very relieved.
That is very good news from the CT! No problem - no treatment needed - YEAH!!
Yes. I had this happen to me about 25 years ago. I had extreme pain quite suddenly in my spleen area and was found to have a much enlarged spleen. After imaging and tests I was found to have a portal vein thrombosis. Over time the body makes alternative routes from the spleen to the liver. This was before genetic testing for jak etc was available. They never actually talked to me about mpns but they continued doing regular blood tests regularly but all were fine. I eventually was diagnosed formally with ET in 2011. Re the thrombosis, they told me a risk is getting varices at the bottom of the oesophagus so I've had 3 yearly endoscopic to check.Summary: for me it hasn't caused s problem
Thank you for sharing your story. I have not had any pain yet but have still been very stressed about the report. They did not do any surgery or give you any medication for the portal vein thrombosis?
No. The hospital I don't think knew a lot about this type of thrombosis then so they kept me I'm for a few days thought about heparin or warfarin but found out it was unnecessary, gave me an endoscope and I went home with low dose aspirin from memory. They continued to monitor me but nothing untoward happened. If you do research I don't think surgery is used very often. Google stuff about portal vein thrombosis
Thank you for the information. It helped me to hear that they monitored you and didn't have to rush into surgery or something. I will hopefully hear from my doctor on Monday.
Update: They said that the ultrasound is not always accurate, so I had a Cat scan to confirm it before they started any treatment, and there was no blood clot. I am so very relieved.
Hi can you please tell me if the test you underwent is Doppler ultrasound?
Yes, it was. They said that the ultrasound is not always accurate, so I had a Cat scan to confirm it before they started any treatment, and there was no blood clot.
Covid antibody test result
Jak2 allele burden results
1 Year on Besremi results
Good results, hoping continues
Bone marrow biopsy results.
