We Can Adjust The Sails

Yesterday they mentioned the T word to me for the very first time.

The T word- too scary to be called by it’s full name yet.  The T word- a small word but signalling the scariest, biggest operation possible.  The T word- only ten letters long, but the start of the most frightening battle for my life.  The T word- Transplant.

In a way it wasn’t a surprise.  I knew it was the last chance for PH, and having been a part of the PH community for a few years now, I’ve seen others go through the process.  And with my lungs having problems at the moment, I was sort of expecting it to be brought up at some point.  I’d overheard it occasionally muttered between my doctors, seen it hidden in my notes, and had it hinted at by my PH nurse.  But yesterday was the first time a doctor had sat me down and mentioned it.

I listened.  I was calm and didn’t really react.  I accepted it.  Phil and I didn’t even mention it to each other for at least 10 mins after the appointment had ended.  I know it’s a positive thing- I have another potential option if they can’t solve my current lung problems.  But lying in bed last night, the adrenaline was pumping through me as I started to think about the T word and what it meant.

I feel like I’ve just been led to the start of a roller-coaster, which I kind of knew would probably happen at some point, but my turn has come up a lot quicker than I was expecting it to.  It’s a roller-coaster of unknowns.  I can’t see what’s going to happen.  I can’t ask others, as the roller-coaster is different for everyone.  They’ll be ups, and downs, and at times it’ll feel like my world is being turned upside down.  There’s going to be a lot of nervous waiting, like the roller-coaster train slowly ascending higher and higher, except I’m never going to be sure when/if the waiting will ever end, and if we’ll progress to the frenzy of the next part of the ride.  The track may finish early for me at many points in the next couple of years, as there are a lot of hurdles to get to the end result: I need to get accepted on to the transplant list, I need to be matched with a suitable donor, I need to survive the operation and the first few weeks.  I have Facebook friends who have been through the journey and come out of the other side; happy, healthy and able to lead a relatively normal life.  So I have all my fingers and toes crossed, and hope that my roller-coaster ride is going to return safely.

So today marks the start of a new journey for me.  I am being referred for a lung transplant at Harefield Hospital in London.  The first hurdle is to be accepted by them when I go for my assessment week in the next couple of months.