I was born with problems
Ed
Ed
I was born with problems. I had one kidney that didn't work at all, and another that was small and had cysts on it. And there were several other things wrong at that point, but it was really only the kidney that was the main thing. They took one kidney out when I was 6 weeks old, and then the other one basically just kept me going. It sort of started going downhill when I was about 7, I think. And then when I was 12 years old I went on call for a transplant, and had my first transplant when I was 13. It lasts 6 weeks. And when they decided to take it out, they said that was when I was going on dialysis. So I started dialysis when I was 13.
I had another transplant when I was sort of … 15? And that lasted about two weeks. And then I had a third transplant in 2009 – however old I was then – 32 or something. And that lasted about three months, but it never started working at any point. So I was just on dialysis while it was in there and they're trying to get it to sort of wake up, as it were. And then that came out.
So, all three transplants came out after they failed – I’ve got none of those in. And I’ve only got the one that I was left with as a baby, but that’s – I mean I can’t even imagine – it hasn’t worked in at least 20 years, so it’s probably small and shrivelled. And effectively I don't have any kidney function. And for the last 20 years or so I’ve been on this – which is haemodialysis, where you go in three times a week.
It’s quite unlucky to have three failed transplants. It’s not unheard of – in my case it’s a little bit difficult to know the reasons because my notes from up to the age of 18 have disappeared. A few years ago, after the last transplant failed, we thought it would be a good idea to look at everything, to see if there’s a reason that we can discern why I might have had this sort of bad luck. But without those notes it’s a little bit difficult to tell – which is not to say if you had them that you would even be able to tell.
It’s not unusual to have some degree of rejection. In each case I’ve sort of had rejection and, you know, it just kept going and attacked the kidney. And never recovered. So, each time that happens, your body is producing lots of different antibodies to try and attack this foreign body, and those antibodies stay in your system. So every time you have a transplant that doesn't work, the chances of getting another one are more difficult. And I think it also makes it a little bit more complicated to treat it, even if it’s just that you know there’s a history of kidneys rejecting, so you know that it might not be plain sailing. So, as far as I’m aware, there’s not, like, a reason. Something that may have some kind of relevance – although I’m not sure, and the doctors don’t know – my brother and my sister and my dad have all got a genetic disorder that affects the kidneys. So, my brother was on dialysis, and has had a transplant, and that’s worked. My sister was on dialysis, had a transplant, and it worked. And my dad’s still OK, he’s still got about 45% kidney function. In the last few years I’ve noticed at that on my notes ,where it says primary diagnosis, it says ‘presumed juvenile gouty nephropathy’ or something – I’m not quite sure what it is. But that is what they’ve got, I think.
I had another transplant when I was sort of … 15? And that lasted about two weeks. And then I had a third transplant in 2009 – however old I was then – 32 or something. And that lasted about three months, but it never started working at any point. So I was just on dialysis while it was in there and they're trying to get it to sort of wake up, as it were. And then that came out.
So, all three transplants came out after they failed – I’ve got none of those in. And I’ve only got the one that I was left with as a baby, but that’s – I mean I can’t even imagine – it hasn’t worked in at least 20 years, so it’s probably small and shrivelled. And effectively I don't have any kidney function. And for the last 20 years or so I’ve been on this – which is haemodialysis, where you go in three times a week.
It’s quite unlucky to have three failed transplants. It’s not unheard of – in my case it’s a little bit difficult to know the reasons because my notes from up to the age of 18 have disappeared. A few years ago, after the last transplant failed, we thought it would be a good idea to look at everything, to see if there’s a reason that we can discern why I might have had this sort of bad luck. But without those notes it’s a little bit difficult to tell – which is not to say if you had them that you would even be able to tell.
It’s not unusual to have some degree of rejection. In each case I’ve sort of had rejection and, you know, it just kept going and attacked the kidney. And never recovered. So, each time that happens, your body is producing lots of different antibodies to try and attack this foreign body, and those antibodies stay in your system. So every time you have a transplant that doesn't work, the chances of getting another one are more difficult. And I think it also makes it a little bit more complicated to treat it, even if it’s just that you know there’s a history of kidneys rejecting, so you know that it might not be plain sailing. So, as far as I’m aware, there’s not, like, a reason. Something that may have some kind of relevance – although I’m not sure, and the doctors don’t know – my brother and my sister and my dad have all got a genetic disorder that affects the kidneys. So, my brother was on dialysis, and has had a transplant, and that’s worked. My sister was on dialysis, had a transplant, and it worked. And my dad’s still OK, he’s still got about 45% kidney function. In the last few years I’ve noticed at that on my notes ,where it says primary diagnosis, it says ‘presumed juvenile gouty nephropathy’ or something – I’m not quite sure what it is. But that is what they’ve got, I think.