PVT and not so great news

I had my 3 month follow up to the appointment where they discovered the partial occlusion in my portal vein. There's a little piece of information they neglected to give me when I was diagnosed with that - and I'm less that happy that they left it out.

Turns out that if this clot gets much worse, I will no longer be a transplant candidate! Now, is it just me, or is that a tad bit important to tell a patient about?? On top of that, I lost a bit more of my belief in my transplant doctor's PA - she INSISTED that she gave me a prescription for a blood histology work up to see if I am predisposed to clotting, AND an order for a CTscan to be done locally since they are 2.5 hours away from me. Now, I now I am not always 100% when I am in these appointments - if they give me bad news, I lose my focus on the words spoken after that - WHICH IS WHY I NEVER go into these appointments ALONE. My best friend (who is going to be with me when it's time along with the man I love) goes in, armed with pen and paper, and 2 folders containing notes she's taken from each appointment, any questions I or we may have come up with since the last visit, and any paperwork I have gathered in 11 years. The PA? She had no such proof - not even any copies of any orders written. Besides the fact that I hadGSo, I ask you, who do YOU believe?

Anyway, back to the problem at hand.

I had a new ctscan yesterday to check on the clot, but haven't heard anything yet. I am really hoping nothing has changed... What I guess upsets me the most is that there is only 1 thing they can "try" to clear up the clot - and, that's Warfarin - RAT POISON. They are hesitant to use it due to my extreme anemia, naturally. Why can't the do a portal vein angioplasty? How about using the surgical laser?? That's damn precise, and it's something they can target very easily. So, what the hell is the deal?????

Going to try for a little sleep....

Blessings to you all!!!

please forgive my many typos in the above post/blog... i wrote late and in a huff!! i am not and uneducated hick from central NY, though my village has more cows than people in regards to population... but, i was truly upset and disturbed by the news... still am to a degree.

Actually Warfarin can be a poison for everyone including animals at high doses. I've taken Warfarin for about 7 years now. A vein was damaged in my neck after one of my hospitalizations. The platelets catch on the rough spot now and cause clotting. It requires regular monitoring of your blood thinner level. Just as with anything medical it takes time to figure out drug and food interactions but I've had only positive benefits i.e. elimination of clots in my neck veins. Cheers Deb

have they tried giving you vit k?