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.

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.

How to become a better person?

I mentioned in a blog on Sunday that my doctor told me that now I had a working kidney I also had a second chance in life and I had to go out and do good in the world. I've changed my career path and now work for a local charitable organisation but how do I go about changing myself for the better?

On paper I have a place reserved in Hell. I don't like children, I'm not fond of cats, I'm impatient, I watch utter trash on the telly, I swear too much, I drive aggressively, I'm more than happy to make disparaging remarks about someone not looking their best, I don't have a lot of sympathy for anything self-inflicted, I'm pro-choice, want the death penalty reinstated and I don't believe in any kind of god. I've also voted Conservative more than once. 

In my favour people always comment on how cheerful I am, I'm loyal, generous and would do just about anything for a someone I care about. I've always made friends easily and been popular so I must be doing something right.

I thought about becoming vegetarian like I was back when I was 17. Surely not eating animals would make me a better person right? But then what if I became one of those militant vegetarians who looks down on everyone and likes to bring up the subject at every opportunity? 

Or I could give up my car and start cycling everywhere. It would certainly help with my weight loss quest and I'd be helping the environment. But we've all met one of those cyclists who truly believe they are the second coming of Christ because they cycle instead of drive.

Maybe I could become more spiritual but I'd hate to end up being one of those people who thank Jesus for letting their sports team win whilst ignoring starving nations.

I used to follow someone on Twitter who took up running. Now he posts a daily brag about how far he's gone that day. It's great he's found something he loves so much but if we all ran 10km each day, who would he boast to? Why do people feel the need to use their achievements as a way to belittle others? I grew tired of "Booyah, ran 12km today while you lot ate chips. Who's the daddy" tweets so a swift click of the unfollow button soon put an end to that.

You can still be a good person whether you eat meat, drive a car or sit on your fat ass watching Jersey Shore.

So how do I improve myself? I've come to the conclusion that by making self improvements you run the risk of actually becoming even worse than you were before. I think the only way I can become a better person is to take full advantage of the opportunity given to me by my kidney transplant. I'll enjoy the freedom it brings to do all the things I love and I'll make sure I stop along the way to remember how lucky I am.

I definitely won't stop eating bacon or swearing though.

Nine Months of Freedom

Today is the nine month anniversary of my mum giving me a kidney. It hasn't been a smooth nine months, I'm three stone heavier than I have ever been due to the steroids and I now have type 2 diabetes which can be attributed to my anti-rejection medication. But still, I'd take obesity and insulin over dialysis any day of the week.

Dialysis is quite simply the worst thing I have ever or am likely to ever experience. It is relentless in taking over your life. I found I was unable to do anything without having to consider how it would affect my treatment. What I could eat or drink, when I could make plans to see people and having to give up work. Holidays were out of the question. There is no break from dialysis. You HAVE to go otherwise you will die.

During the time I was ill I not only had dialysis to deal with, I also had to cope with having two major operations to remove my rugby ball sized broken kidneys, I developed a hole in my stomach which caused internal bleeding and nearly killed me twice, I needed 6 blood transfusions, I had several fits and my phosphate levels were dangerously high. During treatment for the hole in my stomach the doctors also found pre-cancerous cells that they had to remove. And all that is only the half of it.

I had to give up work which was soul destroying for me. I know that might sound ridiculous as we all hate getting up on Monday mornings and trekking to the office but my parents have always instilled a strong work ethic in me. I had never been unemployed since the age of 15 when I used to help out in a sandwich shop on Saturdays and school holidays. I had always earned my own money and I had built up a successful career as a legal secretary. I was earning well over £30,000 a year in London but when my health got too bad we made the decision to move to Bournemouth as my parents live here and it's where I went to school. I got a job with the NHS and my wages halved but after a few months the decision was made that the only way forward was to remove my kidneys and start dialysis and that was it. No more work for me. I went from earning what I considered to be a small fortune to relying on Rich for everything. I am fiercely independent and it was not easy.

I lost most of my friends because of kidney failure. There is only so many times a person can invite you out only to have you call it off due to ill health before they stop calling. Equally, there is only so many times someone can deal with a grumpy ill person before they become frightened of saying something to upset you. In the beginning I had a hard time listening to what I deemed to be trivial problems like "oh, Sue at my office is such a bitch, she bought the shoes I had my eye on" or "do you know what time Chris came home last night? 5am, that's when. He woke the baby up, the dog was barking and that doddery old bastard next door complained". I wanted to scream at them that a few hours earlier I'd been on dialysis and that these troubles were tiny and insignificant. Obviously I realise now that regardless of what anyone else thinks, our problems are the most pressing subject in the world to us. I'm sure that had I come across someone dealing with a death I'd have been told off for feeling so sorry for myself because at least I was still alive. I also stopped seeing people because I felt I had nothing to offer them. I had no witty stories or tales of a hedonistic weekend to giggle over. All I had were tales of my latest hospital stay. I didn't want people I cared about to see me like that so I stopped returning their calls or emails.

On 15th July 2011, I had my transplant. I won't go into how hard it was for me to accept the kidney from my mum because I'll start crying and I can't afford to replace a tear soaked laptop. It started working immediately and I didn't realise how ill I had actually felt on a daily basis until I noticed how alive I felt. When I think about how fantastic I feel now, even with the extra weight and diabetes, I am amazed I made it out of bed back then. Not everything about my time on dialysis was bad, I learned to bake and I read a zillion books. Now that my horrible kidneys are gone forever I'll never be in pain from them ever again. I've been able to throw away the morphine, codeine and tramadol that I've been taking since I was 19 years old. All the stress was worth it just for that.

Flash forward nine months to today and things are very different. I'm back in paid employment, although in a totally different industry. I work for a company that helps local charities obtain funding, improve their goals, reach their target clients and give them a voice in the area. My doctor said to me "Romany, now that you've got a kidney you have a second chance and you have to use it to do good in the world". So I am. Instead of going back to law and being money orientated, I'm helping people improve the lives of others. Admittedly I'm doing this from behind a desk but every cog in the machine has it's role to play. I'm also reconnecting with the friends I pushed away and I'm a lot more sympathetic when someone wants to have a little whinge about their boyfriend.

If anyone out there is still reading and has made it this far, I would beg you to join the organ donor register. My mum gave me her kidney because we weren't sure how much longer I'd last without one. You don't need your organs when you die. Leaders from all the major religions agree there is no reason not to donate. People have always craved fame or immortality but what better legacy to leave than the gift of life?