Hi guys and gals,got approved for treatment pending my latest bloods, today has been a longtime coming, last time this day came about I was in hospital and that delayed everything.
So Off I go knowing today is the day,not heard of Porphyria since it took my mum,over 20 years ago, I had both my daughters genetically tested before they were born,so confident was I that I had done all that was possible to protect my family,then 22 years later after much anguish, the kind we all on here have faced, my hep nurse tells me. That I do not had acute intermittent Porphyria...
I was not for the first time relieved... For a nano second it was full steam ahead, then she told me, this Porphyria has been laying dormant in my system and reared it's head when I became ill.the last person that had Porphyria and liver disease needed a liver transplant,add hep C and I'm the next medical example of that to date,until recently standard tests existed for screening,after knowing about this all my life,thru mum they discover that to be tested properly Blood and urine need to be collected in dark surroundings,as Porphyrians die under natural light, every test I had ever had and I'd had my share was void with this new info,So I got tested in the dark,there it is...always was,now At least I know why I have been so sick.The one thing I do have is a research nurse in the family,that helps,other than that I got more info out of today than I wanted or needed,am I up set, he'll yeah, puts things into perspective for me,as low as I have felt,even suicide at times looked like a goal, I am going to fight this tooth and nail, win loose or draw I'm not going anywhere till I beat this bug,then whatever will be... I HOPE someone reading this draws strength from what I have shared, it's reading similar posts on here that has helped keep me going, the encouragement and positive support will get you thru,give it time to,it's time for me but turns out if I started today it would kill me out right,lesson here is,today wasn't my day,tomorrow don't look any better as I wait on the edge...Now I have to wait some more till they decide what to do or not, in the meantime I need each and every one of you more than ever, your positive posts have helped me and in turn I will help you too.hope this helps someone somewhere, I'm 12000 mile from home, I call England my home, but born in God's own country, Australia,I have not told my 2 daughters yet,so it's not over for me just yet but God willing it won't be anytime soon
Xx