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.

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?