Had a quick check up today up in london, all going well, they are pleased that i have some improvement already, not much but some, seeing as im still on a very small dose.
then they tell me this
they want to send me to papworth hospital for a check up, to see if im a candidate for a heart and lung transplant, to say my heart sank to the bottom of my shoes was the biggest understatement ever, i just felt totally sick :(
but then they said its just precautionary, incase this new drug doesnt work and they have something in place before its too late to do anything if it fails, as this drug is the last option to me drug wise.
ok this is good news but i still felt sick.
so we are going to have a chat about it in november with the team looking after me at the royal free on my next appoinment.
as you can see im at home coz im on here but still feel sick to my stomach, all i can think about is why the heck is this happening to me, ive never hurt anyone or anything in my life and this is what i get. i know there are way worse things happening to other people
sorry to vent, but i had to tell someone and i know you guys are sooooooo supportive to every member, whatever it may be.