Im sorry you had a clot. That is a scary thing you experienced. Unfortunatly clots are a risk w PNH. There is preventative meds you can be given for this.
just educate yourself as much as you can and you will learn what is important to watch for. keep records of your tests.
Www.pnhdiease.org is an online support group. They are very knowledgeable. We have learned so much from that site and this one.
You can order PNH information booklets or read them online at
www.aamdsif.org
If you dont mind sharing, What is your clone size and counts? Do you know your LDH level?
My husbands is
LDH 237
Clone size 29
His platelets are at a new record high as of today! (w/o a transfusion that is,34
(we are literally in the hospital now)
I give thx to God for his improvement
I hope you will be filled w hope after looking over the two.