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The phone rings Part III: The Final Chapter

Two weeks ago today, I was in surgery receiving my new kidney. The hospital kicked me out in less than a week and over the last seven days I have divided my time between the transplant clinic and my sofa, with the occasional shuffle up to Sainsbury's to ensure the muscles in my legs don't atrophy. I've had the pleasure of a steady stream of visitors, all of whom have bought me yet more wonderful and totally unnecessary gifts – I have been royally spoilt and I am stupidly grateful to all of you.

The kidney itself appears to be going great guns. I was initially attending clinic on Monday, Wednesday and Friday and was committed to doing so, but the hospital are so pleased with me they are happy to start seeing me just twice a week. The pivotal result they test for is my level of creatinine, a substance that occurs naturally in the body as a result of muscle break down. The kidney filters out creatinine through the urine, therefore if there is lots present in the blood it is an indication that the kidney is functioning poorly. As of today, my creatinine is 65 which is a normal reading for somebody with two perfectly healthy kidneys. Win.

I also found out today about my donor. She is - was - a forty-nine year-old woman who died of a brain haemorrhage. I had already thought about writing a letter to the family and this is something my hospital encourages all its organ recipients to do....I am going to attempt a draft this week, if I can conceive of how to even begin.

I can't begin to articulate what it feels like to have a stranger's kidney functioning inside me. I do not feel it is mine and I doubt I ever shall, but I have no trouble with this. It isn't mine, I am merely the custodian, an incubator that enables part of this woman to live on. She is not really gone whilst the kidney still pulses inside of me, although I don't think I'll be including anything so saccharine in my letter....I think about her a lot and wonder who she was, what she was like, whether she had children. I think about how she died - morbid, yes, but unavoidable - but have yet to come up with a scenario that is anything other than heartbreaking. I cling to the fact that in electing to sign the organ donor register, she must have wanted others to benefit from her organs upon her death, but then I realise she had probably no idea she would actually die and my head is askew again. There is no way of making sense of what has happened to me so I am not trying; I am just being, and that is enough for the moment, My therapist will help me take care of the rest.

The anxiety about the kidney failing will always be background noise, but it is no longer something I actively think about. Instead, I have chosen to focus on the fact the kidney is working well now, and every day I have with it is a bonus and a blessing, and an unexpected one at that. I am not of the mentality that every day should be lived to the full: some days will get wasted, spent on the sofa with a Dominos and a Dinner Date marathon, and some days will be shit and the whole world will feel bleak. But every day I shall give thanks, because my donor has enabled me to live a life that is great and tedious and black in turn - essentially, a life just like everyone else's. This is just living and for the first time in six years, I am living again.

Several people have asked me what I am most looking forward to, now that I have unlimited opportunities at my disposal; on each occasion I have rather anti-climactically replied that what I really, really want most in all of the whole wide world be normal. Tomorrow, I shall resume my Masters by going back to placement and over the next eight months I want to return to uni and finish my qualification. After Christmas I shall go back to work, probably just doing some ad-hoc TA work, but when I graduate I want to focus on getting settled into a career that is stable, fulfilling and a remedy for my anaemic bank balance. I want to work hard, eat and sleep well and spend time with people that I love; anything else that comes my way is a bonus. That said, a trip to see Old Man Edwards and Anna in the balmy climes of Dubai is high on the list: sun, sea and skiing in the shopping mall - I couldn't ask for much more.

As for seems like an appropriate time to bring this blog to a close. At the very least I'd need to change the name but I don't think "Regular Life NOT on The List" has anything much to commend it. I shall miss writing it, but I'm sure my fingers will soon be itching to connect once again with my keyboard, so watch this space for what will likely be far more mundane musings on much less interesting topics. This blog has allowed me to express my darkest thoughts and share my happiest moments; it has enabled me to work through what at times has felt like an impossible situation and gain some perspective and understanding. It has given me a way to communicate when I couldn't find the words to speak and it has made me realise that my illness is part of my identity and not one that I need be ashamed of anymore. I shall always and forever have kidney failure, but I am slowly allowing myself to accept that failure does not need to define my very being; I am more than the sum of some of my parts. I have a long and unpredictable road ahead, but fuck me if we don't all have that and there is no reason why some of those unexpected bumps need not be happy ones. I can travel, I can start a family, I can drink milk; there are so many reasons to be joyful and optimistic and I have spent enough time crying for this lifetime.

So, I am going to end by saying thank you. Thank you to my family - Anthony, Fiona, Benjamin, Sam and Hannah - for being unwavering in your support and love, for propping me up, for looking after me, for spending endless hours in hospital, for giving and offering me kidneys and for bringing me Percy Pigs. My love for you all is limitless. Huge huge thanks too goes to Rosemary and Bob, Nick and Kate, Nigel, Ian, Paul and Steph and Richard Austen...and yes, I realise I now sound like I am accepting an award.

I was totally overwhelmed by the support I received from my friends, old and new, over the last fortnight. Thank you to each and every one of you: from Blackheath High, from Dulwich, from Cranbrook, from Durham, from John Scurr, from Birkbeck and from all the miscellaneous parties, encounters, run-ins and what-not along the way. Your time, love, care and affection have made the last six years (and indeed, many years before those) bearable and you have pulled me up time and again when all I wanted was to stay on the floor. I am so grateful for every one of you. I have also been lucky to have been in relationships with some wonderful men over the years, each of whom have shared the burden of my illness with me, Maurice in particular - let's get a curry soon. I can't wait to share the future together with my friends and watch you get married, have families and live happy, healthy and successful lives. There are certainly some trips abroad to arrange and I do believe some sort of celebration is in order - I'll make my famous punch.

Thank you to the incredible staff at Guy's Hospital who have been behind me since that first night I was admitted onto Dickens' Ward and placed in the bed beside the nurses' station - the one we later found out was reserved for the children most likely to die. Your expertise and attention to detail have kept me alive since I was nine years-old and no doubt will continue to do so for (hopefully) many years to come. If not...well, I too have signed up to the register.

My final thanks, of course, goes to the 49 year-old female who gave me her kidney, and to her family, who agreed to let it be donated in heart-stoppingly tragic circumstances. I am not evangelical about organ donation and am happy accepting that some people are simply not comfortable with it and never will be. But if you haven't signed the register, all I ask is that you think about it. I had given up on my chance of having a transplant but because my donor signed up, a miracle occurred. I cannot begin to tell you what a monumental difference it can make to the life of someone going through the truly wretched experience of organ failure. I was relatively healthy when I got my call, but three people a day will die before theirs ever comes. These deaths are preventable and all you need to do is go online and tick some boxes. If you end up donating your organs, trust me, you won't know anything about it, but for the person who receives one of them it will make all the difference in the world. You could be a super hero, you could save somebody's life. It takes 3 minutes. Just think about it.

So that's about it. I have some serious living to be getting on with, and have already taken up enough of your time with my endless wittering. I'm off to get myself a glass of water - I hope whatever you're about to do is similarly nourishing. I have no advice to sign off with that will be of any more value than what you probably already know, but what I shall say is this: amazing things happen, awful situations change and you have the strength within you to survive even that which seems insurmountable.

With all the love in my heart,
and all the urine in my kidney,

Rosy x


  1. HI Rosy, just a quick message to say how pleased we are that at your last post things were still going well. We have been thinking about you often and hope to see you sometime. In the meantime we hope you have a fabulous Christmas and keep going from strength to strength! You have been so so brave through it all and if you blog on here in the future I know people will be keen to hear how you are doing following your amazing surgery! Lots and lots of love to you and your family from me and Richard xxxxx


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