Will my boyfriend die young?

Kristy sent me an email recently:

Good evening Greg. 

My boyfriend suffers from dense deposit disease and although he is fine at the moment, I fear the time he may need dialysis or a transplant. I suffer from anxiety so it’s hard to shake these worries. He’s very active, likes a drink, likes to socialise and I just worry about how much of an impact kidney failure will have on his life. Any experience you could share would be a big help to me. At times, I catastrophise the thoughts to simply the fear that he will die young (he’s 26 at the moment).

Kind regards, Kristy

Me:

Hi Kristy, thanks for your email. As I understand it, dense deposit disease is bad news for kidneys, in that it primarily affects kidney function. So you are right, kidney failure is a likely outcome in the future.

How far away that is, only time will tell. Everyone is different, but even sick kidneys can hang on to some function for years. I was diagnosed when I was 20 but, by gradually changing my diet and keeping reasonably fit, I didn’t start dialysis until I was 43. So I had 23 years of fairly normal life before dialysis. I say fairly because during the last couple of years I felt progressively sicker. But during that time, I got married, had three kids and lived a full, satisfying life. Then, of course, I went on dialysis.

At the time, I thought my life was over, but within a few weeks I began to feel healthy again and found that I could still live a full and healthy life: I just had to build dialysis into my weekly routine.

This pattern is not at all unusual, many people have the same experience. And it is likely that you and your boyfriend will too.

Your boyfriend is your boyfriend because of who and what he is and how you are together. Those things won’t change once he starts dialysis, even if he has to modify his life to fit it in. The challenge can bring you both closer and make your bond stronger (it did for me and Julie). Life will go on and you will be happy and sad, frustrated and delighted in the same way you are now.

So don’t catastrophise (I love that word!). Take the long view and all will be well.

Regards, Greg

From Kristy:

Greg, thank you so, so much for this email. It has really helped me to feel a sense of ease regarding the future. I really appreciate you taking the time to respond.

Choose your holiday dialysis chair by App

I recently had the privilege of attending a workshop hosted by the Victorian Renal Health Clinical Network at the state Department of Health, and to contribute to the future State-wide Clinical Pathway for Victorians with Chronic Kidney Disease and End Stage Renal Disease.  A bit of a mouthful, but it was a collection of 60 people from all areas of renal services, including head nephrologists from the major state hospitals, private nephrologists, private dialysis service providers, renal nurse practitioners, key clinicians including nurses and allied health, peak bodies and ‘consumers’ like me, looking at our “could be/should be” future. (more…)