In the run up to the operation I was a terrible nag to Joel (even more than usual.)  But I promised him that I would stop nagging him about eating properly and everything else once I'd given him the kidney.  I told him that I was nagging him because I was working so hard – to get into shape, to avoid infection – that he had to work hard too, but that once he had the kidney it was his to do with as he wanted.

Easier said than done.

Straight after the operation it was easy – for a start he was being nagged and monitored by the world and his wife, plus he was feeling so much better than no-one had to nag him to eat or drink the right things.  Of course I was in no fit state to give him any kind of nagging – I was too busy being nagged by everyone else – to eat properly, to have a shower etc. etc. the shoe was most definitely on the other foot (and I was a lot less kind about telling people to butt out than he is!)

But a few months after the operation we went out on a really hot summer day.  You may already know from information you've been given about transplant patients that they are more at risk from various types of cancers, so have to be particularly careful about staying out of the sun.  And, just like regular human beings they also have to be careful about drinking enough fluid on hot days.

So we went out.  Joel didn't bother with a hat or drinking much fluid.  I had a hat, loads of sun cream and was drinking lots of water.  And I was the one who got heat stroke.  I ended up back at home literally sitting in a cool bath trying to feel normal.  But not before I had a huge go at Joel.  I told him off for not wearing a hat, not drinking enough water, and most of all, for not taking it seriously.  He held his tongue but I could tell he was pretty pissed off at me.

A couple of days later I called him to apologise.  I’d promised him that I'd butt out after I'd given him the kidney, but it was hard.  Even other people would ask me to “have a word with Joel” because they thought he would listen to me more, and he probably did – but it still wasn't my place.

When Joel got really sick again a couple of years later I spent a lot of time in the hospital with him.  Perhaps because of his speech difficulties sometimes people think that he is slow – he's not, but he does sometimes have communication problems (don't we all.)  So, when I picked him up to take him home from the hospital for the weekend, the nurses impressed upon me the importance of him keeping up his fluid intake – 3 litres a day they said.

I pressured him.  I insisted he drink water even when he didn’t want to.  The nurses had told me it was vital and despite all my promises to let him do his thing he was so ill that I thought I was doing the right thing.  Plus I was also worried that if he didn't keep up his fluid intake at home they wouldn't let him out on the weekend again.  He drank a full 3 litres on the Sunday – and then threw up.  I felt so bad (but probably not as bad as he did.)

When I took him back into the hospital I explained to the nurse.  Her response “Oh well it's not that important.”  I was gutted.  I’d tried so hard to make Joel follow medical advice and in the end it wasn't that important? 

I think that was when it really sank in for me – that I had to let Joel make his own decisions about his health.  Maybe he does have communication problems, maybe he sometimes feels so rough that he can't do everything he is supposed to, maybe sometimes he does need a bit of help with his tablets when they change drastically, but he is the only one who knows how he feels and he is the only one who can make the decision on how he should live his life.

Over the years I hope that I have finally stopped nagging and cajoling and that I am now just a supportive, helpful big sister.  I hope.  But even without a kidney transplant it's hard for families to know where to draw the line between help and interference, or downright bullying, so… if and when you give someone a kidney first and foremost be kind to yourself.  It's hard to let go straight away, and it's easy to cross the line because you both want the same thing – the transplant to go well.  But… in the same way that you are the only one who knows how you feel, the recipient is the only one who knows how they feel.

I'll never stop being Joel's big sister, which means that sometimes it's so hard to bite my tongue and not jump in, thinking that I know what's best for him.  But like anything, it gets easier the more you do it, so take a deep breath, take a step back and do your best to let go.