Morning all,
I have posted on here a few times and read all your posts daily. I am struggling at the minute with this illness.
Brief background - 46 years old and was diagnosed with MPN JAK + , most likely ET In November 2016. I have been told I am a complex case as the highest my platelets have been is 466! However even at this level I unfortunately suffered from 2 x splenic infarcts which led to my diagnosis. Considered high risk because of this so started Hydroxyurea and clopidogrel.
Unfortunately the pain from the infarcts has been long standing and a recent CT scan showed tight stenosis of my Celiac Artery and an aneurysm on my Splenic Artery. Currently on morphine patches for the pain which is really difficult as I am trying to continue 'normal' life, working etc.
I have been referred to a vascular surgeon who I am seeing next week but am really interest to know if anyone else with ET has suffered from these problems. I have researched a little bit myself and from what I understand the likelihood is that these have also been caused by a blood clot. As you can imagine my head is all,over the place as I read all the time that the majority of ET patients have much higher platelets and no blood clots. It is scaring me as to what is happening with my body!
Any advice anyone ?
Lorraine xx