Dialysis is pretty hard.  It's hard in terms of dietary and liquid restrictions, and also in terms of pain management.  The doctors are incredibly stingy with drugs for dialysis patients (a bit like being pregnant!)  I was trying to get my brother to try hypnosis for pain at one point but he laughed at me!  What worked the best for him in the end is an anaesthetic cream that you can get on prescription – you need to apply it to the arm about an hour I think before dialysis (depending on the cream) and it should then have kicked in so that putting the needles in isn’t so painful.  It's been a year, and my brother now does it all without pain medication (that's just him – he decided to go hard core) but look into the options before your loved one actually has to start dialysis, as this seems to be the trickiest bit for a lot of people.  And unfortunately  doctors, while sometimes so incredible at keeping people alive, forget how important the actual pain management and resulting quality of life is.

There's also an incredibly good book on dialysis I found online.  It's American but very down to earth and talks very frankly about the emotional impact of dialysis. It's called "Dialysis without Fear: A Guide to Living Well on Dialysis for Patients and Their Families" by Daniel Offer, et al.  I bought it for my brother and family and I think it was a huge help to us all in understanding dialysis, and even realising that a lot of the stuff that Joel was going through was perfectly natural, and more importantly, manageable.  It’s actually inspired me to finish writing all this information about transplantation too.

For my brother, and for a lot of other patients, the first few months of dialysis are the hardest.  Just the thought that you have to have dialysis three times a week for the rest of your life, or until a transplant is available, can feel like a life sentence, rather than a life line.

In his book Daniel Offer even talks about people who have felt suicidal at this point, apparently it's common.  But unfortunately, because they are feeling so depressed many people ignore the medical advice they have been given and make their dialysis that much harder – causing them to be even more disillusioned with dialysis.  My brother Joel is so good that, as depressed as he was, he followed all of the guidelines, and he was aware that slowly he was feeling better.  Putting on weight, being able to go for walks, yes, the pain of putting the needles in was very hard on him, especially at first, but the first few months are not representative of what it is like to be on dialysis long term.

Joel's turning point came when I went to dialysis with him.  I sat there the whole time, watched them put the needles in, watched him doze off.  Then I took him home, let him have a nap, and went and bought him an iPhone.  He was actually waiting at the door when I got home and we spent the rest of the weekend (and the rest of the year) figuring how it worked and getting his favourite music on there.  I will never know if it was my sitting through dialysis with him, or the iPhone that made him turn the corner in his depression.  Actually forget that, it was definitely the iPhone.  And it gave me something else to focus on as well.  Instead of wondering about the million and one complications of dialysis, I was wondering about the Apps, the iTunes account, how on earth to rent movies on the thing, yes, technology is a wonderful thing, and yes, a year and a half on he still loves his iPhone.

Now that Joel has handled the pain issue of dialysis, the biggest issue is the fluid.  More often than not they tell him he can have a little bit more fluid but he worries about having too much and having breathing problems, and I have to take a huge step back and try to remember that no matter what I think, he is always, always going to do it his way.