Monday, 1 September 2014

Signed and Ready!

Just wanted to say that I really appreciate the fact that people even bother reading my blog, and again I'm sorry for my terrible spelling and grammar, but you get the jist of things! 

Anyways so I have been to harefield last Wednesday and I was surprisingly very calm and relaxed. I can't take credit for that completely. I may have mentioned in my blog before that on a Tuesday and Thursday we have this lovely lady called Sarah that comes onto the ward and does reflexology, for anyone that doesn't know what it is, I strongly advised you research it and find your nearest salon/place that offers it! 
Very relaxing and very good for your body. But Sarah is so much more than just that, she's emotionally helped me through the past month and I can say hand on heart my head wouldn't be this clear and focused without her! 

So I had my lovely mum stay with me the night before the harefield appointment, just made sense as we had to be there so early and get through london traffic. 
So had my morning ivs at 6am and off we went around 7.30 to harefield. 

Well we got there just after 8! Wasn't a single bit of traffic haha but was nice to be early and had a lovely full English in the cafe before the clinic! 
For anyone going to harefield or wondering about the cafe, it's lovely, always had great food there! 

Found out at the start of clinic there was only myself and another girl pre transplant being seen that day as dr carby was away. 
There was no surprise in clinic to spot which girl she was, the small petite young girl in a wheelchair was a give away, and everyone else was defo post transplant, all looked very healthy and full of life! (Always a boost seeing them, gives you a glimpse of what life could be like) 

Anyways because I'm an impatient at the Brompton and everything's on the same system, I didn't need to do X-ray. Had my bloods done, lung function and thankfully it was the quicker and easier lung function this time. 
Lung function came out at 22% so not too bad for me! 
Had ECG and then echo! 
Defo almost fell asleep having my echo, apart from the fact I was having my ribs and heart side boob poked with a hard jelly stick, it was so relaxing, dark and warm room and the sound of my heart beat now and then! After waking up at 6am I was exhausted! 

Then we was free until 1.30, so we poped to my aunties, who live near by and had some lunch and snuggles with my cousins baby until it was time to go back. 

I was worried about seeing the dr because I'm so used to dr carby, but the lady I saw was more than lovely. 
We went through how things have declined over the last 4-6 months and more so in the last month and we all agreed that it was time to be listed again.

Got a bit tearful, esp after talking about my fears and thinking of a dear friend of mine I lost after he received his new lungs, but once I had a good old cry I was ready to crack on! 

The transplant coordinator took me into another room after as I had to do my afternoon i.v drugs and we spoke a bit more about what happens next for getting me back on the active list. 

As I was on the list in 2011/2012 there wasn't any problems they thought about getting me listed again, but needed to check latest ct scan and make sure with surgeons, speak to dr carby, and do a few more tests, my favourite 24 hour urine collection!! 
Also because it's been over two years since I was on the list, I have forgotten a lot and felt like I needed to go through it all again so I know exactly what I need to know. 
As it was a lot to go through and didn't want to overload me with information she suggested that they come and visit me on foulis ward to give me time to read the booklet and be ready to go ahead and sign everything. 

Which brings me to today! 
I'm signed up! After a two hour meeting/conversation with Brian and tom, explaining every detail and procedure of the operation, the donor information, the recovery and general bits I need to know. Also answered the questions I had and many poped up! 

So now I just wait for the call to see when I'm listed again. I've signed the paperwork to say I will accept any lungs! 

Because I'm so small I have also signed that I will accept a lobar transplant, which means instead of transplanting a full 5 lobes, they can transplant 3 from a large person to fit into my tiny body! 

There was another option but I can't remember the name, something like a reduction transplant (not correct term) but means they can cut down lungs to fit me, or give them a trim! (I think)

And also they will add me to the children's list, as I have a child size body, if lungs become avaliable and no other child my size fits them, i will be considered. 
I might be small but I'm in a good blood group (A) and have no anti bodies 
If it's meant to be it will be! 

No doubt I will blog once I'm listed and the waiting game begins! Just need some new pjs and a little transplant bag ready for whenever that call comes!! My positive head is back on!!

Good news is my lung function today was 23% so it's going in the right direction, and should be released on Friday for lots of hen weekend fun! 

Was also my baby sisters 15th birthday today so we had a lovely evening finishing the day off with a lovely my old Dutch pancake down the kings road! 


Love love xx

Here's a few Piccys from tonight :)