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
I've been following your blog for a long time now (I have CF and on Kalydeco in the US) and have been watching extra closely these last couple weeks. You are a ROCKSTAR. Your courage, positivity, and strength is so inspiring. STAY STONG - I have no doubt those lungs are coming very soon! Sending lots of good vibes your way xoxoReplyDelete
George, I've been checking in on your blog since the beginning of your current admission at Harefield. I'm one of the radiographers and have xrayed you many times, both conscious and not. Your determination and strength never fails to inspire me, and no matter what unimaginable pain and struggle you've felt each day, you've always been willing to try. I'm eagerly awaiting your next post, keep fighting girl, my colleagues and I are rooting for you. See you soon xReplyDelete
You are an inspiration to us all :)ReplyDelete
I hope you're doing better, and that you've not blogged lately because you've finally gotten those lungs! Praying, hoping, sending positive vibes your way, that those lungs get there ASAP! ♡♡♡ReplyDelete
I keep checking in to see how you're doing. I hope all is going well and that maybe you've gotten your third times a charm set of perfect lungs. You have been in my prayers. I will keep on checking in in the hopes of seeing some amazingly wonderful news! Sending good thoughts from Texas.ReplyDelete
Here's one more person that keeps refreshing your blog, hoping for wonderful news! I really hope you're doing super well and that the reason for no new posts is that everyone is just too busy working on getting you your best! xReplyDelete
I keep checking your blog to check how you are, and how those new lungs of yours are doing. I have been following your blog for a while because I think you're such an inspiration and give so many others hope. Keep strong and fighting, you have so many people praying for you xxxReplyDelete
Sorry for saying the same as everyone else but I wanted you to know that there are so many people praying for you & constantly checking the blog to see how you are doing. You are truly inspirational & your strength, fight & spirit comes through in every post /tweet. Hope you are spending your time resting & building yourself back up xxxxReplyDelete
Checking in again. You are in my constant prayer, two, three times a day, I pray that you are doing well. Just wanting you to know that you're thought of and by the looks of it on many minds.ReplyDelete
Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.ReplyDelete