My heads spinning

I've been waiting for my head to stop spinning from all the things that have happened and are still happening before writing a blog, so It at least had some chance of it making some sort of sense! It seems however my head is just going to go into a bigger spin so I thought I would just bite the bullet and write something. 

I was released from what felt like prison and death row on Friday and was determined to come home and have a normal relaxed weekend which I did, although it went far to quickly! 

On Monday I was woken by nurses trying to sort out referrals to different teams, filling out more forms to enable benefits to come through more quickly now im more poorly. This was followed by another trip to Christies for bloods, seeing a Dr ( to re talk about all the jolly things we need to face ) followed by another CT scan and then home.

Today was a non Christies day and was meant to be a quick trip to Wythenshawe for an echo to establish a normal heart for when I have my transplant. That however like me ended up not being simple! I had my scan done in silence and then was told I'd need to see the doctor?! It seems I have something ' floating' on the end of my central line.  They wanted to do bloods to check for an infection but i couldn't face that again as been checked for infection and had routine bloods for last 10 days non stop and all normal. 

They then said that there was a concern with my tricuspid valve  as it had some ' vegetation' on it? They wanted to rule out endocarditis ( an infection of the heart ). Because that's all I need right now! So I now need to be admitted on Thursday nil by mouth for heavy sedation and to have a trans oesophageal echo ( via a hose pipe in my wind pipe ). Thursday was meant to be my one day off from hospital and appointments for 5 weeks but it seems it wasn't meant to be! 

So now I am under investigation in 2 hospitals just to make sure I don't get too bored!

Spoke to my consultant today and she is very sweet and is my own little fan club fighting my corner so it's always nice to speak to her. 

I'm always surrounded out of the hospital setting, with amazing family and friends who really couldn't do enough for me. Friends have set up a fundraising page called mend Maddie's mummy (  http://gogetfunding.com/project/mend-maddie-s-mummy ). Other friends have been doing things to raise money and awareness and so many people have signed upto the Anthony Nolan trust to go on the list to be a stem cell / bone marrow donor. I really am blown away. 

There is probably an awful lot of things I'm missing out of my update but my brain is a bit far behind and a bit back to front so I'm sure it will come to me at some point soon, maybe!