I've been on the active list now for almost 3 weeks, and boy has it been filled with ups and downs.
The day I was listed it felt like a massive weight had been lifted off my shoulders and I felt massively relieved that I was finally active and that call could come at any moment. I was over the moon with the speed at which I had become active on the list as well so all in all I was pretty happy with the outcome.
Unfortunately that happiness was short lived, and within a day or two my happiness and positivity had sunk to rock bottom and I was feeling proper crap! I'd gone from having deadline dates to have everything sorted for to 'wait for a call' a call that could come anytime, it could be in an hour, a day, a month or a year, we have no idea at all when it'll come and to me that's the hardest part to deal with. I am a really impatient person, so to not have a date or goal to aim for is so so hard.
We all know what it's like waiting for a delivery when they give you a window of 8am-8pm and you rage because you want to do things with that day and you joke that as soon as you go the toilet the door bell will go, well imagine being told, you'll get your call, it'll be between now and the day you die..... its a little frustrating to say the least!
After the first week of feeling down in the dumps and fed up with things,I gave myself a kick up the arse and my mood has gradually picked up with regards to waiting for my call.
However making things worse/harder has been the fact that I've been in hospital for what feels like forever,I had been in a week before I was listed and ended up doing a 3 week stay on IVs to no real change in my chest or breathlessness, so I struck a bargain with the team that if they let me leave for 6 days so I could spend time with Emily during her days off work I would return for another 10 day stay for IVs when she flew back off to work and they were happy with that. So I'm now back in after my 6 day stay at home which was amazing! The best 5 days I've spent with Em for a while and it was long overdue! But I'm back in NUH now for 10 days then I'm escaping again so I can spend the weekend away with Em before she jets off again with work!
My consultant has written to the consultant at Papworth to let them know the changes in my health and to let them know I am deteriorating slightly at the moment just so that Papworth are fully upto date with my situation which is good. I call them every other week and let them know how I am and the hospital call them with every blood test result I have to keep them updated with that.
I haven't got the energy or breath in my lungs to wash myself at the moment and I am relying on Emily more and more each day, I'm 24 and I am like an 84 year old with my mobility and health! I struggle to walk 5 metres to the toilet and I have to sit down when I get there to get my breath back, life is getting pretty difficult for me at the moment, I know it may not be permanent but for now it's really draining emotionally and physically. Having to psych myself up to go for a wee isn't something I ever thought I'd have to do at the ripe old age of 24! Life is definately a lot different to how I imagined it but with the power of science and the beautiful NHS I will get my life back and live the dreams I have with Emily and live a long happy and healthy life!
If anyone is interested in signing up to the donor register follow this link and it's literally 2 minutes and you could save several lives!!
http://www.organdonation.nhs.uk
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