HELP! PORTAL VEIN THROMBOSIS

[viaduk]

Hi all... Haven't been on the site for a while, and I do apologize. WHen I was finally told that I was "cured," it seemed  better to occasionally post on this, and other groups, whenever I had something to offer. Sorry, again.  I will be more active here in the future.

Anyway, here's my story. I'll try to make it brief, and hope that you folks would kindly give me some opinions/advice regarding my situation:

I am a cirrrhotic (MELD 14) who has been SVR for over 2 years.  Prior to this last battle, I tried all the interferon/riba treatments that were offered to me.  THis all resulted in 3X treatment failure and a great deal of post tx issues that never resolved. The abbvie cocktail for twelve weeks cured me of HCV. I count my blesings evey day.

MY new problem is that I deveoped a portal vein thrombosis. The MRI indicated "chronic thrombosis of the main portal vein with canaverous transformation.   SMV, IMV and splenic vein  noted without evidence of thrombosis.  PERIGASTRIC, PERIESOPHAGEAL, COLLATERALS ARE ALSO SEEN.'

My doc tried a 6 month course of injections  of a blood thinner, but the clot remains!  MY body seems to have formed collaterals that pick up the work of the cloged vein, and my liver doc says that this is good and that I can live with it for a long time.

Des anyone here have any similar  experiences? Do you folks think that collateral veins can do the job? Is there something that I am doing or not doing that can help me improve things?

THank you very much!   el

[viaduk]

Thanks for the reply, Hector.  Yes, I am seeing a hepatologist who is the medical director of the TP program at a NY hospital. The portal vein blockage was seen on a MRI, and he put me on daily injections of loveenox for 6 months in the hopes that it was recent blockage that would dissolve.  Initially, the clot reached the hepatic veins, but follow up mri and sonogram revealed that it is now restricted to the portal vein. 3 more months of lovenox did not dissolve the portal clot, and the doc said that it's probably not worth continuing and that the collaterals will pick up the slack.  I did not specifically ask about the cavernous transformation, but I am certain that I do have cirrhosis.  I had not heard that it was rare, and he never mentioned it, but I will ask in early August when I am due for follow up.  

I was hoping that folks that have portal vein thrombosis, without ascites, have dealt with their condition. I know that a shunt is possible, but both my doc and I would like to avoid that unless absolutely necessary.

Thanks for your help.... el

[HectorSF]

Hi and welcome to the cirrhosis community.

Cavernous transformation of the portal vein (CTPV) is a rare occurrence in adults and It usually occurs in healthy livers (non-cirrhotic livers). There are many causes of this condition and any treatment/prognosis is based upon the cause and the particulars of how it presents itself clinically.

So not knowing who your doctor is or his specialty I would at least get a second opinion as to the long-term consequences. Or at least get a better understand of this rare condition, its cause and impact on your future health.

Since you know your MELD score I assume you are being seen at a liver transplant center? Only a transplant center would they have the personal with the knowledgeable and experienced with this rare condition to assess it. Since you are in New York State, the best hospitals are the liver transplant centers in New York City. If you are going to one already I would at minimum ask for a full explanation of your CTPV and any possible future consequence especially in light of your cirrhosis.

Best of luck to you.
Hector