So yesterday marked the first week on the transplant list. It's been an absolute whirlwind of emotions, mixed feelings, questions and more thoughts than I could ever have imagined.
It started with excitement, I came home from Papworth last Wednesday and was called on the way home with the good news that I had been finally listed, it then felt a bit like an anti-climax because I'd waited for that news for so long and I'd been working so hard to get there, it was like I no longer had anything to work towards. Of course I do, I need to maintain my weight and my sugars need to stay as controlled as possible, I need to stay well so if a call comes I can go ahead with the transplant, so I do still have things to work towards, my weight is still not perfect so I am still working really hard on that, it's really important I don't let anything slip and become complacent now I've got there, I need to stay there!
Speaking of my weight, it has increased since being listed. I lost weight recently and I think I was so stressed out about the whole will I won't I get on the list, I was convinced it was all going to come crashing down and I would be told I wasn't eligible for transplant after all the hard work I'd endured. I don't think I realised just how stressed I was, but now looking back it's so obvious, I had got slightly snappy and not just when I was unwell, I barely slept and was an emotional wreck. This all took it's toll on my weight which plummeted from 44.1kgs (2nd April - my transplant assessment at Harefield) to 40.6kgs (30th May - in clinic at Papworth) which was around an 8lb loss all during the time I was 'waiting' to find out if I was going to be listed, it's crazy how your body can react so badly to situations! So there's my tip guys, if you want to lose weight - stress yourself out!! Haha.
Anyway, my appetite has gone through the roof since my stress levels have returned to normal and I've now gained 6lbs since the 30th May I now weigh 43kg. I'm eating so much food all day and night, I'm not sleeping a lot because I'm constantly hungry, a little frustrating but I'm not complaining about wanting to eat, I would love to get higher than 44.3kgs as that is the most I've ever weighed. I'd love to achieve that and that is my new goal, when I put my mind to something I know now I can do it!
Regarding my feelings about being on the list, it's been very strange and hard to adapt to 'list life.' I'm constantly on edge and panic everytime my phone rings, you would think I'd be excited everytime the phone rings because I know how desperately I need a transplant, but it's such a huge operation and the whole thing itself scares me so much, I'm frightened of dying, I don't like pain and I know I will be in pain, I'm always afraid of the unknown and this is absolutely unknown. I can read and read other peoples experiences and their 'tales of transplant' but until I go through it myself I won't know how I will feel, how I will cope or if I will get through it. I've questioned my strength the past week more than I ever have in my life, I don't know if I'm strong enough to get through the procedure, I've been up then down and everywhere in between. I hope it settles down soon, I had a call from a private number just a few days ago and I was almost sick with fear, it wasn't Harefield it was my contract renewal (got a new phone, yaaaay) so I was actually relieved it wasn't the call which is completely not understandable, as you guys all know I've worked my butt off to get on the list, now I'm actually on it, I'm so so so scared I can't even explain it. I don't think anyone will understand unless you are in the situation and are waiting for a transplant, but then again not everyone will! I know I'm extremely unwell and without a transplant I'm not going to be alive much longer, so I know I need it, but that doesn't mean I'm ready or excited about it, even though I ignore the stats and figures you can't help but think about them and think I might not be 'the lucky one,' it might not happen for me, all I can do is wait, keep fighting and keep going! I don't have a choice because I absolutely do not want to die, so no matter how scary transplant is, or how unprepared I feel, I'm going through with it 100% :)
Transplant is the only option now and when the call comes, I will take it all in my stride! I suppose I'd like to think it will be a case of rushing around so much it will just happen and I won't actually have too much time to think about it. I know both my parents, Josh and my Stepdad are coming to wait at Harefield with me so at least I won't be sitting waiting to hear if the transplant is going ahead alone, I always need plenty of distraction because I have severe anxiety so I think it will be good for me to have them all there.
I guess I won't know until it happens and I can't say whether I'm ready or not until I get the call.
To prepare myself in anyway I could, I got my 'transplant bag' ready yesterday, it needed to include quite a lot of things so I bought a nice new, floral bag and got the majority of the stuff from Tesco, so now I have all the bits and pieces for when the call comes, that helped my mind a bit because now I feel properly prepared, I just need to get my brain ready which sort of happened a little bit today when I had my lung function checked for the first time since before my 3 lung collapses, it was tested in January and it was 24% then today it was 12% highest, I had lower readings and that was my best :/ I think that completely cemented in my brain that I need new lungs because I can't keep living off 12% lung capacity, it's no wonder I've been extremely unwell lately, I've been struggling more than ever and I wasn't surprised at all that it was low to be honest. It is a little scary but it hasn't changed anything, it's helped me if anything because I now know I NEED lungs!!
In other news, I'm going to the Ipswich Star Press Ball next week, I was the guest of honour last year and it was an absolutely amazing night, I'm very excited to have been invited again. I have a lovely blue dress which I've only worn once (my 21st birthday party) so I'm looking forward to wearing that again. Other than going to Tesco yesterday and the odd hospital appointment, I've barely left the house in the last few weeks, we've had visitors, like my parents and my Nanny and Grandad came round for KFC which was great, but I haven't had a good excuse to dress up and go out, so I have one now! No matter how ill I feel, I will definitely be there, woo. Lemar the singer is performing and I will try my hardest to meet him lol ;)!
That is about all for now, I'm trying to keep my blog more updated but at the moment I don't have a lot to say, hence why this post was a bit all over the place. I kind of feel I have so much going on in my crazy little head, it feels good to get it all out and write it down, to try and make sense of it somehow! I understand my blogs have been a bit up and down lately, it's crazy and I'm definitely I'm on a rollercoaster!
Perhaps I'll never make any sense and I am just officially mad :)...?
Thank you for reading and I hope you are not confused/bored lol!!