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.
Well done for making something difficult more understandable for people that could help but don't. I'm going to make all my friends who aren't on the register read this so they eventually donate too. X
ReplyDelete