The Good, The Sad and The Ugly!

The Good: Well it's great actually, Miss Tori got her call for transplant today and it was THE CALL not just another false alarm. Things are looking very good so far so hopefully all those false alarms were just keeping her busy whilst waiting for this perfect pair.

This is Tori's live journal which will be updated with all transplant news by her friend Jay until she is well enough to do it herself - http://tori-x.livejournal.com




The Sad: Sadly Nicola from the CF forum passed away this week. I'd never really spoken to her before but she always seemed to have an amazing inner strength. I was on a fellow CFers facebook page earlier and saw her name in their friend list and I clicked onto it and saw she had a photo album titled '2010 is gona be awesome!' which made me feel kinda sad. It's weird how just hearing about the death of another person with CF can make you sad, even if you didn't know them, just read posts they had wrote.

Breathe Easy Nicola x x





The Ugly: My liver, I actually saw the piece they took out, I'm not sure why but I asked after. It was very long but really thin, floating in some liquid, reddy brown, I thought it was going to be more brown but then I thought about it a bit and realised I was thinking of cooked liver! I nearly didn't have it done as they said they didn't have a nurse who could do the sedation, but lets rewind a little, got there Thursday night a little late as we always get lost on the way to the QE. Was put in a double room with a lady who was 72 and it was her first night in hospital in her life!! This is quite an alien concept to me! She was lovely though, very friendly. Next day they came to get us both at the same time and they wheeled me round the corridors and left me in the corridor outside the ultrasound room. I was there for 45mins!! A student nurse had been sent down with me and she was trying to make sure I was warm (anyone who has been in the old part of the QE will know that it is near impossible to be warm in a flimsy gown under a flimsy blanket in a corridor under a window!) Just as they were planning to take me back to the ward they came out to get me, first thing I said was I wanted sedation and they said I couldn't because they didn't have a nurse that could do it there and thats when I started freaking out. They told me they they would ask next door but if not I would either need to have it without or cancel, I think they thought I would say have it without but I said cancel. They started to do the ultrasound anyway and then in came a nurse with monitors and some sedation. They didn't give me much but it took the edge off and they gave me a little oxygen as well, I didn't actually need it as my SATs were 95% but my breathing was a bit all over the place so it helped me to get my breathing more regular and the in-out-in-out gave me something else to concentrate on which helped calm me alot!

I really have no idea why I freaked out so badly, I don't remember been that bad when I had my transplant and I felt like a bit of a twat after! Even while I was still in the room looking at the tiny piece of liver I felt stupid but oh well it's done now! Recovered pretty well, blood pressure was a little low at times but nothing too bad and went home about 8hours later, a little sore and quite tired. Now it's just waiting for the results so fingers crossed I don't have any rejection and everything is good!

Anyway I'm hoping to be in Heartlands tomorrow, yep you heard that right I'm hoping to be going into hospital, firstly because I want to be finished my IV's before everyone comes over from Spain for Marcus's first birthday and secondly I have a stinking cold (which I'm pretty sure has something to do with that corridor) that has already headed to my chest so what was meant to be some get-me-to-my-very-best IV's has turned into I-need-you IV's but at least I'm getting straight on top of it!

Biopsy

My memory has desserted me and I can't remember wether I mentioned that the liver peeps want me to have a biopsy, well it's booked in for tomorrow, I have to be at Queen Elizabeth at 6pm tonight and to put it as politely as possible, I'm shitting myself, everytime I think about the needle I come out in cold sweats and think I'm going to throw up, so I'm doing my best to not think about, this approach however isn't getting me anywhere fast! I still haven' t got anything ready to go although thankfully it will just be an overnight stay (I hope!) but to add to the fun factor I'm in Heartlands on Monday for a few days while I start my IV's. I want to have my stuff ready for that before I go QE but I don't see that happening now! Oh well I'm not great with plans!

Once I'm into Heartlands I will try and do a proper big update or a few smaller updates to make it all a bit easier to read, I'm saying I have loads to say but I do have a few things!