Well after being diagnosed less than a year ago my doctor has just told me I now have catastrophic Hughes. During xmas I had heamaturia. Seems there was a blood vessel in my kidney that was compromised. I lost lots of blood and had to be transfused and to have my warfarin reversed. I now have 12 mg warfarin and 2 clexane injections each day.
Prior to xmas i had an MRI and the results showed that i had been having mini strokes (that explained the head aches). So all I can say is "whats next". I have come to terms with the fact that i will never work again. I am just getting tired of not knowing what each day will bring.....my husband is an Angel and is so supportive......my doctor is awesome......So I guess i shouldn't be feeling sorry for myself. Anyone else have catastrophic hughes?