Hi! I’m 40 but was dx 2 years ago w/ a PVT (blood clot in my portal and SMV veins). This clot is causing portal hypertension. The collateral veins (cavernous transformation) are great in that they have formed to relieve some of the pressure, the flip side is that they are causing esophageal varices. Now, they think I have a gastric varices-which if ruptures is worse than a gun shot wound! Death! I was perfectly healthy -no drugs or alcohol. I’m so annoyed! My liver doc just did a stiffness test (results 5.6) and blood work (enzymes normal) and scans show a perfectly healthy liver. Heart tests also show heart is also good. However, my plumbing (vein flow) is bad! My portal vein is beginning to become morphed, my spleen is enlarged and as a result, my iron is low, my hemoglobin won’t go higher than 8, and my platelets are also low-although I get infusions, they can’t keep up with this greedy spleen! My stomach hurts everytime I eat and the bloat hurts the top part of my stomach so badly. My waist is 28” but after I eat can expand to 34”. I’m starting to have serous back issues because I’m always hunched over in pain or hunched over because I’m cold due to the anemia. Heat pad helps at night, but I’m starting to get weird marks on my stomach from the excessive heat when I use it too much. My docs have me on Eliquis, and Coreg-each 2x daily. Although my blood pressure is typically low, I’m on the Coreg to help reduce some of the portal hypertension. However, I get extremely lightheaded and dizzy all day. I guess dizzy all day is still better than death from ruptured varices.
My Quality of life is on a decline. I still don’t know what I can eat or not eat and I’m terrified to work out again because I don’t want any thoracic pressure to rupture varices.

Has anyone got their arms around this thing and are managing their symptoms/secondary issues? Any tips? Pointers?