I'm newly diagnosed and would like to hear what others are doing for treatment. Presently, I'm on blood thinners and still undergoing testing.
For me it wasn't diagnosed for a little while. During which time the blood clot led eventually to a liver transplant. During that time I was in hospital and I wasn't too aware of what meds I was on.
Since that period I have been on Warfarin to keep the chance down of another clot. It has been impressed on me that I should never miss a dose of Warfarin.
The cause of the clot was PRV (Polycythemia Rubra Vera) a condition in which the bone marrow produces too much blood. This it seems made me more likely to suffer a clot. So I am also on meds to reduce the effects of PRV. Ontop I take an immunosuppresant to prevent rejection of the liver.
The diagnoses and transplant were in 1993.
I've never heard of this. What were your symptoms?
Thanks for sharing. Oh my! I'm so glad that you are doing well after the transplant. How sick were you when you were put on the transplant list?
I feel blessed already that I don't see that experience in my future. I'll keep taking my blood thinners and hope that there is a cure sometime soon.
I may be one of the 70% of people who never find out why they got this. I don't have the gene that is found in patients with Polycythemia Rubra Vera.
I've heard this is extremely rare..I guess it is. Symptoms were pain in upper stomach area (around liver), lethargy, & nausea. Many patients who do not find it frequently have swelling in their stomach. Elevated blood work numbers got the ball rolling towards a diagnosis.
I believe I was quite unwell. I had some 'breathing space' as it was only one half or 'lobe' of the liver that was affected. So the other lobe was working and keeping me alive. I don't know how long it would have continued that way. I got a transplant after about a month as I remember.
I probably don't know the full details of Budd Chiari, but I thought it was the specific condition of having a blood clot in the venous system of the liver. But obviouly you don't have that situation, but they still call it Budd Chiari. What are the specifics of your case?
My situation was somewhat further complicated in that after the first transplant they found there had been damage to the gall bladder. As that organ is closely connected to the liver they decided a second graft was required.
That occured in planned way about a year later. But unfortunately that immediately rejected and so fairly quickly I needed, and fortunately received, a third transplant. Albeit a rushed affair this third liver has been good and all results since, very positive. A true case of third time lucky!
Not enough is known about budd chiari it's very very rare . Follow advice carefully and listen to your body
Thanks!