Home dialysis: a lifeline

Last year at Christmas time, I wrote about my experiences of sudden kidney and heart failure earlier last year and living on dialysis. While I was grateful to have survived this experience, my life changed completely. I felt exhausted nearly all of the time and was restricted in what I could drink and eat and where I could go.

At the beginning of this year I was pessimistic about returning to my old life any time soon. But then I was extremely fortunate to be given the opportunity to learn to do haemodialysis at home. I was the first patient at St. George’s Hospital to be offered this. I was daunted at first: the idea of cleaning my blood in my home without supervision was not something I’d ever imagined for my life. But with two weeks of training at the hospital, I learnt how to set up and use the machine, how to connect myself, and how to resolve any alarms and issues.

Now five days a week I set up the machine, fill it with dialysate, flush it with saline water, connect a series of cartridges and tubes, before connecting myself through two tubes. The machine then filters and returns the blood to my body, a process that lasts four hours. Once the machine is finished I disconnect myself, disinfect everything, and I can go about my day. The process can be stressful: keeping everything sterile for infection control is important. But it is becoming more natural now with muscle memory, and becoming less of a challenge and more of a routine.

Managing the dialysis alone can be a hassle, but I now have the flexibility about when I can do it, which has given me back some control over my life. After feeling powerless for so long after last year, I could finally do something to help myself. But the major benefit has been to my energy levels. As I am dialysing five days a week instead of just three, the process is cleaning the toxins out of my blood more often, and I feel less exhausted. It’s still about half as effective as a human kidney and I still feel tired and sleep a lot of the time, but it’s not quite as bad as before.

I can also relax restrictions on my diet and fluid intake. I have to follow a low potassium, low phosphate, low salt diet, but with more frequent dialysis I can have some restricted foods from time to time: I was finally able to have a pizza after more than a year!

As a result of feeling slightly more energetic I have been able to do more, including meeting friends. I have been able to go back to work on a phased return thanks to a very supportive employer in the civil service and team. I would encourage anyone, including those with a long-term health condition, to look at the UK civil service as a career.

Living with organ failure doesn’t come without its obstacles and hiccups: unfortunately I have been back into hospital twice so far this year, once for a surgery and again for a blood transfusion due to anaemia. The hot weather has also been difficult due to my fluid restriction, as I can’t drink very much water. But overall the trend is towards improvement, and I am grateful that I am gradually getting better. Home dialysis has been very beneficial, and my heart has begun to pump a little stronger, although it is still weak. Without a living donor it may take several years before I can have a transplant, but at least I am moving in the right direction.

The lessons I have learnt while going through this roller-coaster ride of kidney failure during a pandemic are:

1. To make the most out of present: I used to think of all the things I couldn’t do, what my life was like before this, and what it could be like after a transplant .The reality is that I could be waiting years for a transplant and lose invaluable years of my life that I won’t get back. I am restricted, but I can do some things that my health permits, without putting everything on a list for the future.
2. To try not to worry about factors outside of my control: I can’t heal my organs, and I can’t change when a transplant will be available for me. Naturally a serious illness takes its toll on mental health and I have bad days as well as good days. But I find it easier to focus on worries that are in my control e.g. setting up my dialysis, my diet, exercise, and work.
3. To ask for help when I need it: it is easy to try and soldier on alone and not want to bother others with your problems. But it is surprising how many people are willing to help when asked, and a strong support system makes a difficult journey a lot more bearable.
4. To see the big picture of what I have to be grateful for: when I was at A&E with 2% kidney function in April 2020, I did not know if I would make it out of hospital or not. Over a year later I have been able to recover at least a portion of normality in my life. I am grateful to be alive and to be able to do many things.

Research is essential to supporting the thousands of people in the UK with organ failure. Kidney Research UK funds life saving research, including into how to prevent organ disease and failure, reverse damage to organs, and to extend the life expectancy of people on dialysis and transplant treatment. To support Kidney Research UK, please donate here.

Many thanks,

Alex