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. 

Welcome to Hell, I'll be your tour guide.

Last month I wrote a blog about my kidney transplant being 9 months old. I got some really great feedback on Twitter about it with people saying they didn't realise how invasive and distressing dialysis was. Thing is, I actually held back because it upsets me to think about it and I find it hard to process those emotions. When I do look back on the bad times I get very panicky and end up crying. I just sit there and sob for a few minutes until my brain snaps me back to reality. I do wonder if I'll ever address this but the answer is probably no.

I've decided to expand on that blog a bit in the hope that just one of you joins the Organ Donor Register. I'm going to include a couple of gnarly photos so if you're squeamish, look away now.

As I sit here having finished work until Wednesday with a gloriously fun packed four days ahead of me involving friends, Mexican food, movies, driving through the countryside and a visit to the Sealife Centre, I remember where I was a year ago today. I was in Dorchester Hospital having Roger the kidney removed. I'd had Lionel removed in at the end of April the previous year. Those of you that know me will probably realise that this meant I spent mine and Rich's 2 year anniversary in hospital.

I was diagnosed with kidney problems when I was 19. From then on I survived on a cocktail of codeine, morphine and tramadol to deal with the pain. I regularly suffered Renal Colic which is proven to be more painful than being shot, surgery and child birth. Don't believe me? Look it up. My kidneys were the size of rugby balls and covered in cysts. Twice I had procedures to drain the cysts. This meant lying on my side while a doctor repeatedly inserted a huge needle through my skin and into my kidneys.

Don't for one second think I'm saying I've had a terrible life. Despite the health issues I've enjoyed holidays, gigs up and down the country and I've lost whole weekends to a bottle of tequila. Yes, the pain sometimes meant I had to stay at home or in hospital but I made the most of the times I felt normal. I can think of plenty of people who've had it worse.

When I was 24 it became obvious that the only way forward was to remove my kidneys. Thanks to this I have two 14 inch scars on my abdomen. They start where my ribs meet in the middle and sweep down in a curved line. I hate looking at them. They are disgusting. I am disgusting.

I've already gone into the adverse affects that dialysis has on a persons life. What I didn't include was that my hair started falling out because of the Heparin used during treatment to thin the blood and stop it clotting in the machine. It fell out in clumps and I was scared every time I washed it. I once got so close to dying that my hair started growing blonde rather than my natural dark brown because my body didn't have the resources to make the pigment.

I also didn't mention that kidneys are responsible for telling your bone marrow to make red blood cells, they regulate the phosphate, calcium and potassium inside your body as well as controlling your blood pressure.

Oh, and without kidneys you can't produce urine. So you stop weeing. Completely.

Needless to say, the dialysis diet is terrible. You're limited to 1 litre of fluid a day because whatever you drink stays inside your body in your blood stream and puts pressure on your heart. This includes anything you drink and fluid in food like sauces, gravy or soups. Due to the potassium problem you're advised not to eat lots of fruit and veg and to have a maximum of 2 portions a day. This also rules out potatoes and chocolate. You can't have milk, cheese or yogurt because of the calcium and phosphates. In short, you live a life of perpetual thirst on a diet of boring food. I pretty much existed on plain bagels. If you don't stick to the diet or fluid restrictions, you die. Simple as that.

Along with fluid the main toxin removed by the dialysis machine is creatine. This is the waste product your body produces in every day life and would usually be filtered out by the kidneys. A new born baby would have a level of 60 and a body builder would be around 150. Mine regularly topped 900. The fatigue you feel is like nothing I've ever experienced. If the worst hangover and cold you ever had got together and had a hellish love child, you'd be 50% of the way there. I felt like this every single day. There was no reprieve.

In the end, I had no choice but to send my mum under the carving knife. From day one she'd been keen to donate but I'd refused, convinced I could cope and hold out until one came up from a dead donor but after all the complications, it wasn't likely I'd last much longer without a kidney.

All over the country, right now, people like me are on dialysis simply because there aren't enough kidneys to go round. You do NOT need your organs when you die. What's the point of burying them in the ground or burning them. If you were in a position that you or your child needed a transplant of any kind, you'd take it right? If you answer yes to that question then you have no reason not to join the organ register. If you're not willing to give but you are willing to receive then, and sorry if this sounds harsh, you disgust me.

It costs the NHS in excess of £30,000 per YEAR to keep a person alive on dialysis and that's not including any hospital stays or complications. To keep a transplant patient alive it costs just £6,000 a year. The news is full of protest at NHS cuts but think how much money they'd save if every person offered their organs up. I have no idea what the costs are like for heart, liver and lung transplant patients but I assume they're similar. Think how many nurses, research projects and new machinery could be funded with these savings.

And now, as promised, the photos.

This is Lionel. He died on 28th April 2010. The green ruler in the middle is 9cm long.

This is Roger. He died on 4th May 2011. As you can see, he is being held by the surgeon. He was huge.

This is my poor arm during a dialysis session. Normally there would only be two needles but I regularly ended up with three like here because of complications. If you read my Kindle vs Books blog then maybe now you'll understand why there was no possible way of me holding a book in that hand.

The complications mentioned above would result in bruises like this.

Or this.

Remember, if you take your organs with you when you die, you take someone else with you.