So my day started very early, 4am to be precise. I have been waking up at this time for the last few days desperate for the toilet, I mean commode, haven't quite got the luxury of using a normal toilet yet! However my mum has brought me some lovely toilet paper so one step closer aye!
After doing my thing I found myself wide awake, so what to do at that time of the morning, watch a bit of "I am cait" Bruce Jenner transgender story. Internet took a while to load and I don't actually think I got to finish one episode and fell back to sleep around 7ish.
I then remember being woken up by mum and nurses at 10am and everyone worried about me. You literally can't sleep out of hours in this place without everyone freaking out! I had to have a few bags of magnesium and potassium as levels were so low, another reason they were all freaking out cause I was sleeping lol when I woke up I was like whatttt I woke up at 4am I'm making up for loss sleep! Lol
My uncle came to say goodbye but I was out cold! I held his hand and gave him the thumbs up!
Anyways once I finally rose from my pit! I enjoyed some lovely weetabix in hot milk and loadssss of sugar!! I have such a sweet tooth and since being in Harefield, I've hardly eaten anything like that or fizzy drinks!
I then sat in a chair and chilled next to my bed, been trying to get out of bed more cause it makes me feel so much better!
Anyways randomly all the Drs came around like a ward round and also Simone one of the consultants introduced me to a surgeon. He said to me oh you look better than I thought you would! There's me all chirpy chatting away through my bipap thinking nothing much other than this was just a ward round. He explained about when they do my transplant surgery about how they will have to do open heart surgery to remove the stent and also do reconstructive surgery on the svc vein because of the narrowing. I was taking it all in and like ok , bla bla and off they went.
Mum said to me after cor your so calm, I thought they were coming to say we have lungs haha and that didn't even cross my mind! One thing I've learnt about this hospital is never assume anything! Plus you see everyone around all the time!
Anyways I took in everything he said about the heart and vein etc. it's got me all a bit nervous, just because it's out of my comfort zone and it's hard enough on my little body having a double lung transplant, but I'm going to have to go through all that too! It's big stuff!
Anyways just chilling again, 20 mins later, they all come back in. And the surgeon says ok so we have a potential donor!
I was a bit taken back, esp as it was day time, your mentally prepared for night time calls! They said it would be hours before they would know more but they would get me ready like it was going ahead. I've done a trail run already so I knew what the crack was!
My plan for today was to have a good wash anyways so the only difference was it was with the surgical wash instead!
It was quite nice that I didn't have to rush, my body just doesn't do rushing!
So got my little bowls.
Shaved my legs and under arms that alone made me feel amazing!
Then I just got naked and sat on a towel on my chair and washed like that! My poor mum has seen it all now! Bless her!
It felt so good to wash, I do all my bits and mum done my back. The only thing I didn't do was my hair. I was exhausted after and to be honest I didn't care.
Even managed to go on nasal cannula for about 5 mins so I could give face a good wash! And tie back hair!
Once that was done, I had loads of bottles of bloods taken which is standard, everyone who's done this or goes to tx clinics pre tx knows how much blood they take for all sorts!
He was funny the Dr who done it, my veins are rubbish so he comes in with a cannula- I hate cannulas at the best of times, but I let him try, it went in, then blew up so we went back to old school butterfly needle but my god it took ages, I couldn't feel my fingers by the end of it, literally must of been about 10-15 mins, the blood was dripping so slowing into the bottles!
Anyways that was that done, then I was nil by mouth. Nurse did all her forms. Had blood pressure done, all was good. Then it was the waiting. Now this is the worse part.
The transplant coordinator came to see me a few times to keep us updated, and like last time it was from a non beating heart donor! But that's all I knew!
I was very calm, we all were, me mum and lee. I was soooooooo hungry! So I think I was so distracted by that I couldn't even think about what was or could actually happen! And then I started feeling sick I was so hungry, so I tried to sleep to take mind off food. Mum and lee were sitting there secretly eating sweets the buggers!!
Anyways Long story short,around 7pm we found out it wasn't a go ahead! But like last time I'm so thankful that people are still donating, and families are making that brave choice to go with it! The donor and the families are the true heros in this whole process! And I can't even imagine what they are going through!
I am gutted because I feel stronger mentally and physically today, but each day I'm getting strong so when my time comes I will smash this!
Maybe 3rd time lucky!
Had a yummy Chinese for dinner and a bottle of orange lucozade! First fizzy drink in Harefield! Lol
I'm mentally stronger today, feel like me instead of a numb person! I hope that continues and I don't fall back into a zoned out emotional wreck, but it's all part of the process!
Love to all