I am new to the forum and my wife (age 46) recently had a liver bypas (TIPS procedure) due to a clot in a vein (she also had a splenectomy 10 years ago due to a cyst on her spleen) and has just been diagnosed with:
2. JAK2 positive
3. Budd-Chiara syndrome
It is very scary and I was hoping anyone might know the answers to any of these:
1. She is on Hydrea and Warfarin and has been vomiting and constipated quite a lot - is this something that changes over time or does she need to look into some other medication? She recently went 5 days with passing a stool even after taking many laxatives.
2. The haematologist (Simon He from Australia - he is one of the best so we are comfortable with keeping him) said she would transform to secondary Myleofibrosis (MF) within 5, 10 or 15 years - I was of the understanding this occurred in only 10% to 15% of cases (that's what I've found reading anyway) but he already says it will happen?
3. Is there anyone else out there who contracted ET in their mid forties (apparently this is young) who has had the illness for a while and could advise me of what their doctors are suggesting about the long term outlook?