Starting Dialysis – answers to questions you were afraid to ask

dialysis machine in useLast week I received this moving email from Emily, describing how she and Edward (not their real names) felt when Edward eventually began dialysis.  I am sure it will strike a chord with BigD-ers and their partners/carers everywhere.  She also had lots of questions, like we all did when we started but were too embarrassed or didn’t know who to ask.

I think Emily’s email, and maybe my answers, will be relevant to many other members of the BigD club, not the least because they will realise that they are not alone. (more…)

What to expect when you start Dialysis

I’ve had several posts and emails this week from people new to the BigD, wondering what to expect and how to deal with it when the time comes to join the BigD Club as an active member.

Starting on dialysis is always traumatic.

Firstly because you are not well. As your kidneys gradually fail, you feel progressively lousier, weaker and more miserable. You are in a fog and often don’t realise how unwell you are. Decisions don’t come easy.

Secondly, because you dread dialysis more than you should. From the moment your doctor mentioned it, you have fought it. Over the months or years since then it has become a big bad deal in your mind: needles, pain, failure, precious time taken from you.

So, what’s the reality?

You’ll feel better and brighter. Often after the first run. This is not surprising, since the artificial kidney has removed the bulk of the toxins and waste products that were making you feel like crap. What is surprising, is just how much better. You can think. You may even feel a little jolly; your body is just so relieved.

It actually doesn’t hurt that much, it just looks like it should. The needles are big and they do go into your arm, but since most units use local anaesthetic and the nurses are usually gun needlers; they don’t hurt. It only takes a few seconds. To begin with, just look away.

As far as time goes, well, if you dialyse three times a week, four hours a time, plus around 40 minutes each side (about 30 minutes to get there, 10 minutes to get hooked up, 10 minutes to disconnect and 30 minutes to get home), that’s as close as damn it to 18 hours a week. My doctor used to say it’s the equivalent of a part-time job (one where you can’t call in sick!).

But I don’t think that’s the way to look at it. He’s right in that it’s a firm commitment, but when you go to a job, your time is not your own. When you go to the BigD Club, it’s all about you. At first, you may feel like just sitting and sleeping, but after a few months, your body will bounce back and look for more interesting activities.

It’s an fascinating thing: Many studies have found that people rarely change from who they are. If an obnoxious, sleazy shyster wins the lottery, he may become generous for a while, but eventually he reverts to his obnoxious, sleazy, shysterous-but-rich self. And if a happy-go-lucky person loses both legs, she may be miserable for a while, but she eventually becomes a happy-go-lucky person with no legs.

Rest assured it’s the same with dialysis. It will take you a few months to get used to it, but you will. And as you do, and you’ll find a way make it part of you.

In short, expect to be pleasantly surprised: the pain is minimal and you’ll feel pretty darn good; and deal with it the way you deal with all the other obstacles in your life, one day at a time.

Finally, remember that it is a Club. Every member has been through exactly what you are going through and we are usually very happy to help, advise and listen.