The K-Factor: Organ Auditions

I realise that this news has been public for a few weeks now but I'm only just able to control my feelings enough to write this blog. I got as far typing the title and started to doubt whether I'd be able to finish, it is such an emotive subject for me.

There are some truly special people who seek to donate a kidney to a stranger and there is a system in this country to allow them to do that. It's known as altruistic donation and after seeking medical advice and having the necessary tests a recipient is found by comparing who on the waiting list best matches that organ (there are various markers such as blood type, tissue type etc). The donor has no say in who their kidney goes to. 

MatchingDonors is a website that allows renal patients to advertise their need for a kidney in the hope of finding a donor. They can post whatever they want from a photo, the details of why they need help or a back story of their family life. 

After having my kidney transplant last year and knowing exactly what these patients are going through I felt it was important to go on record as saying that I fully support this website.

I appreciate the concerns that people have. You are basically auditioning to an unknown audience who get to decide whether to save your life or move onto the next page. However, I actually think this is a good thing, at least for the donor. 

Something that comes up when you talk about donation, whether for right or wrong reasons, is the issue of who gets the organs. It could go to somebody you wouldn't approve of. An example that springs to mind is when George Best was given a new liver after destroying his own one through alcoholism. He continued to drink alcohol and ultimately died 3 years later. Whether he should or shouldn't have been given the liver is not for me to comment on but I can't help wondering who else on the waiting list was passed over so he could have another chance. 

The website would remove the uncertainty over who will get the benefit of your gift. Obviously George's donor was dead but would the family of the deceased have been pleased to know their loved ones liver had been wasted? Being a live kidney donor is not something to be taken lightly and the prospect of it going to somebody who won't appreciate it has to be considered. I think it's perfectly acceptable to want to be sure that the recipient will treasure it, look after it and live their life to the full and that is exactly what the website will facilitate. 

Of course not everybody has a tragic tale to tell. If I was uploading an audition I wouldn't be able to compete with the "please help me, I want to see my children grow up" or "I've had to put my doctorate on hold while I have treatment" but for every person that finds a kidney via the website, it's one less person on the waiting list meaning I'd have a better chance, however remote, of getting the call we all dream of from the hospital. Whatever your viewpoint, less people on the waiting list can only ever be a good thing. 

I understand when people say that we don't have a right to play god or that we have no right to judge who is more deserving than others. But, the first British woman to sign up to the website is a mother of 3 young children who is in her situation through no fault of her own. Wouldn't you rather your organ helped her over somebody who destroyed their kidneys through drugs or alcohol? I'm absolutely not saying that people who fall in that category should receive no help, I'm only suggesting that if you got to choose then surely knowing you'd enabled a family to stay together would be your preferred option. 

There is such a shortage of organs not just at home but on a global level and there is a black market for kidneys that will continue to thrive at the detriment of the poverty stricken donors until the amount of organs available drastically increases. There is huge potential for this website to entice people to join the donor list for when they die. If they read the stories behind the patients it might spur them into signing up. Being a living donor isn't something that is going to appeal to everyone and that is fair enough. Why would you put yourself through an unnecessary procedure for no benefit to yourself? But there is NO REASON AT ALL not to donate your organs when you die and if people become aware of how much they could change another persons life and sign up then it is hugely beneficial to everyone.  

With regards to my own health I will need another kidney at some point in the future. The average transplant lasts around 10-15 years although there are cases of them lasting 20, 30 and even 40 years. The next time round I won't be able to get one from my mum and I'm an only child so I don't have any siblings I can guilt trip or bribe into helping me. Having the horrifying promise of more dialysis in my future terrifies me. We are so lucky in the UK because the average waiting time for a donor is only 2 years, in America it's 3-5 years and in South Africa it is 5 years. 

I could write for hours and I'd still never be able to properly explain just how debilitating and terrible dialysis is. It's relentless. If this website allows people to escape this torture whether by finding a donor directly or removing people from the waiting list then it must be celebrated. I will admit that the fact you must pay to advertise your needs does repulse me slightly but after your first dialysis session you soon realise there isn't much you wouldn't do to free yourself from the machine so I'm sure many patients would see the fee as a necessary evil. I would love it if a payment-free version of the system was available though.

For the people who have been quick to slam the idea behind it, try and imagine your life on hold for several years whilst having invasive treatment 3 times a week. If you experienced it for a day you wouldn't be so quick to judge. 

Barren Karen - No kids for me.

I DO NOT WANT CHILDREN

There. I've said it.

This statement is usually met in one of two ways. Either people look at me like I'm some kind of freak with two heads and a tail or they smile knowingly and say that I'm young and will change my mind.

I don't and I won't.

The people who have a problem with this tend to be parents. If you are a parent and you're reading, please know this - your kids are awesome. Even when they're having a tantrum in the supermarket, drawing all over their siblings with permanent marker or shaving the dog. Your decision to procreate has no impact on my life so my decision not to procreate should have no impact on your life. Just as I respect your choice, you should respect mine.

I have two very good reasons for not wanting kids. The first is for medical reasons and the second is that I know I'd be a terrible parent.

My kidney disease is hereditary. Except actually it isn't. Confusing? Yes. I have kidney problems because of a genetic mutation that occurred when I was a teeny tiny foetus. Think X-Men except rather than shooting lasers from my eyes or controlling the weather, my kidneys don't work. But now that I have the rogue gene there is a 50/50 chance of me passing it on to any children I have. The gene can't be dormant, if you carry it then you have symptoms. This is how we know mine is a genetic mutation because there is no history of renal disease in my family so it's not something my mum or dad have passed on to me.

It's at this point that people usually jump in with extremely helpful (*cough*) advice such as "every baby has a chance of something being wrong with it, you won't know until you try". This is very true. Every foetus has the chance of developing some kind of fault whether it's a hole in the heart or a cleft pallet. There is also the chance of disabilities and other diseases. But the odds are usually very long and in your favour. My odds are 50/50. Toss a coin - heads your baby is born with a life threatening illness, tails it isn't. Still fancy those odds?

I've seen my mum go through hell watching me almost die several times and it was her gift of a kidney transplant that saved my life (well, for a while at least). If I have kids it will be entirely my fault that they are ill and I won't be able to do a single thing to help.

I would make a terrible mum. I don't like being outside - beaches and parks are my idea of a living hell. I can't stand noise or mess, I lack even a small amount of patience and I'm neurotic at the best of times. Any child of mine would spend its life indoors watching tv and that is no life to lead.

Then there's the money aspect. Call me a judgmental snob, I really don't care, but if you have kids without the means to support them then you are scum. I don't mean people who fall on hard times, I mean the ones that decide to have kids as a way to get a flat and an income. Once we buy a house next year we will have to be frugal to ensure that we can provide for ourselves, let alone providing for a baby.

I've never been maternal in any way. My friends would always coo over a baby in the street but I wasn't remotely bothered. I've never once said that I wanted children and when I was diagnosed with renal problems at the age of 19 and I found out the odds of passing it on, it validated my decision. Rich has made no secret of his wish to remain childless too. My friends have been having kids for the best part of a decade and whilst I love all of their children, not once have I looked at any them and thought "I wish you were mine".

On medical grounds alone I have good enough reasons for not having children but I'm constantly surprised at how many people disagree. I've spoken to numerous doctors and the renal psychologist and they all wholeheartedly agree with my decision, not just for the health of any potential child but for my own health too. Add to that my hatred of the outdoors and inability to provide support and I find it hard to see how anyone could come to a different conclusion yet they continue to do so.

I'm often asked why we don't consider about adoption if I don't want to pass on an illness to natural children. It goes back to the fundamental basis that we do not actually want any kids.

It's 2012. We as a species can have happy, loving same sex or inter-racial relationships that are only frowned upon by sad, uneducated bigots. So why can't two people decide that they are happy with each other and leave it at that? Why does society gasp in horror and consider a woman to be a failure if she doesn't pop out a few sprogs?

I've been told by earth mother types that it's my responsibility as a woman to produce children. Really? I'd have thought it was more of a responsibility to ensure that any kids are healthy and well looked after but obviously not. I've been accused of being selfish because I'm an only child and am therefore depriving my mum of becoming a grandmother. Yes, because what my mum needs instead of just one loved one slowly dying from an incurable disease is two loved ones dying the same way. My grandfather died from lung cancer when my mum was 14 and my grandmother committed suicide when my mum was 16. She has often expressed how hard it is to grow up without one or both your parents and that's exactly the risk I'd be putting on my kids. And yes, any one of us could get hit by a bus tomorrow but dying in a freak accident is not the same as dying from a life threatening illness that is systematically destroying your body.

So please, society - let me carry on the way I am. What I'm doing isn't hurting you in any way so stop pushing your ridiculous ideals on me.

And as for you, Mr Stork - well you can just shoo and be on your way!

Twitter saved my life

I should probably start off by saying Twitter didn't literally save my life. The Fail Whale didn't swoop down and save me from drowning, it's nothing quite as dramatic as that. What Twitter did do however was to show me that the world was still turning when my own world was pretty much inert.

This past Sunday was the 1 year anniversary of my kidney transplant. I have had an entire year free from the nightmare of dialysis, fluid restrictions, poor health and all the other nonsense that goes with it. A whole year of happiness, healthiness and being normal.

Before the transplant I was really quite ill and I'd become a bit of a recluse. My whole life revolved around being at home and dialysis. The only people I saw and spoke to on a regular basis were Rich and my mum. Of course I would see various nurses at the treatment centre I visited 3 times a week but they worked on a rotating shift basis so I could go days between seeing each of them and even when they were there, they were obviously far too busy to waste time chatting with me. I knew a few of the other patients to exchange pleasantries with but only when we were leaving. The floor plan meant that patients were split into groups of 4 or 2 around the room. I happened to be in a group of 2 with a man who used dialysis as an opportunity to catch up on some sleep so talking wasn't high on his agenda. Not that I minded, I was more interested in reading my Kindle than making small talk.

During each 4 hour long dialysis treatment I would check Twitter every 15 minutes. It became a little marker to pass the time. I don't entirely understand why but seeing what other people were doing while I was in my own little 240 minutes of hell made things more bearable. Almost like a reminder that things wouldn't always be the way they were.

My Twitter usage wasn't just confined to during dialysis as I'd go on it at home as well and I cannot even begin to explain how many truly wonderful people I have 'met' on Twitter. There's this perception that the internet is a dangerous place and that you can't trust who you're talking to because it's probably an old man sitting in his pants but that is definitely not my experience. On my Twitter I speak to renal patients around the world and their knowledge and advice has been invaluable to my own recovery. There are The Girls who I talk to about what the best foundation might be, the latest mascara to hit the shelves, anecdotes about our pets and, of course, who the best eye candy is at the moment - Detective Morgan seems to be a firm favourite. There are fellow food fanatics who I've been able to discuss recipes with, find out about the best seasonal produce and see pictures of their fabulous creations which has provided endless inspiration for my own kitchen adventures. I've gone from knowing nothing about football to being able to keep up with scores and tables thanks to Twitter. I've been able to get recommendations for local restaurants, sales, markets and events from people who live in the same area as me. My parents went to San Francisco earlier in the year and someone on Twitter recommended a particular tourist attraction that they would never have considered and it turned out to be a highlight. I did some voluntary work last year packing Christmas stockings for our injured army troops that I found out about thanks to the information being retweeted.

Of course there are negatives; privileged celebrities moaning over nothing, vile trolls, love quote accounts, illiterate plebs and porn bots but then again, there is always the block button. If you don't like someone, you can just unfollow and block them. It's that easy.

I had so many lovely messages of support while I was ill and all from people who are technically strangers. There's something about being disconnected from a person that allows you to say things you might not say to someone you know. My friends have all told me how difficult they found my illness because I was falling apart at the seams and there was nothing they could do about it. They didn't know how or what to say to me without accidentally saying the wrong thing. Sometimes I would just want to hear "you're doing great, Romany. Keep going, stay strong" but it's hard to say that to someone lying in a hospital bed connected to tubes because you can see that it isn't the truth. It's so easy to type out 140 characters and press send when you can't see the condition of the person you're sending it to. Honestly, without some of the kind words I got on Twitter, I'm not sure how much fight I would have had left in me during a particularly scary time in January 2011.

Twitter has become a society in its own right and I keep trying to explain this to people. Now that I'm back at work and venturing out into the world once again I'm contact with more people and unless they use Twitter, they don't really know much about it. When the whole thing recently crashed for a few hours, these were some of the responses on the Daily Mail website (yes, I realise nothing anyone says there should be taken seriously).

It made me so cross! Twitter is not about avoiding going outside or speaking with real people. It's about connecting with others that share the same interests as you. None of my close friends are remotely interested in baking so I talk to people on Twitter about it. Most of the latest news stories break on Twitter first, it's an excellent way of keeping up to date with current affairs. 

Facebook has turned into a deathly boring desert of baby photos, advertising, games and an endless number of "like and share this photo in three seconds if you love Jesus/can see a face/remember the Teletubbies" pictures. Twitter is alive with jokes, news, stories, recipes, recommendations, reviews and information.

Facebook is all about projecting an unrealistic perfect picture of your life. People only post photos of themselves looking their best in a desperate attempt at keeping up with the Jones'. Twitter isn't like that, at least the people I follow aren't like that, and I think it's a good thing. The brilliant people I follow are just as likely to share a failure as they are to share a success. Again, I think it's probably partly to do with the anonymity aspect. It's one thing to admit to a group of people you most likely aren't ever going to meet that you've messed up but putting your hand up in front of friends, colleagues and family is another thing altogether. Last year a friend from school got married. It was a huge affair and must have cost a fortune. Her Facebook was full of "...has the best husband ever!!" etc. Less than a year later and it's all over. She's quietly deleted all her wedding pics and removed the ring. Surely the more you put yourself on a pedestal, the harder it is to fall and I do believe that Facebook encourages this kind of behaviour. I haven't seen anything like this on Twitter, it's more honest and true. 

I guess I just want people to stop hearing the word "Twitter" and immediately think that everyone is an idiot who only tweets about what they're having for breakfast or that it's just full of vacuous nobodies who are only online so they can connect with celebrities. Of course there are people like that but the vast majority aren't. 

Twitter helped save my life by keeping me connected to the world at a time when I wasn't able to do it myself. It has put me in touch with some amazing individuals who although I haven't met them in person, I am proud to be able to call them my friends.