Living with kidney disease

“If we look to our mental and emotional health, as our healthcare team looks at our physical health, we all have the potential to live well with kidney disease even in the most darkest of days.” | ©Jacob Lund / Adobe Stock

If you want my advice on how to cope with kidney disease, read on. In a short space of time I went from a 20-year-old sports and fitness studies student to someone experiencing kidney failure to becoming the “Fastest Sick Person in Europe.” So I now what I what I am talking about.

Or, to put t another way. In a short space of time I went I from being a healthy student, to a dialysis patient, to a transplant recipient, back to being a dialysis patient, being a transplant recipient (again), and eventually a  husband and father. Either way, my lived experience coping with kidney disease is grounded in reality.

While I somewhat love the KidneyTrails  “road” analogy of coping with kidney disease if we are honest, life with kidney disease is more like traveling on a rollercoaster than a road!

If I were to offer any advice on how to cope with kidney disease from my rollercoaster journey, I would say it it is imperative to focus more on our mental health. Yes, medical treatment of the actual disease is essential (obviously), but don’t underestimate the power of the mind to help in the healing process.

When I was diagnosed with kidney disease as a 20-year-old sports student, I put my very ill body in the hands of my healthcare team. They did a fantastic job. I went into the hospital with blood pressure so high they worried I would have a stroke. Several of the blood vessels in my eyes had burst, resulting in vision problems, and my body was in a very toxic state.

Two weeks later, as a dialysis patient, I left the hospital in a better physical state but, what about me as a person? My life, my goals, my family situation, my work, my mental and emotional health?

There was no help. There was no “treatment protocol” for these things, nothing.

While I found the shift to becoming a “sick person” challenging to comprehend on a physical level, I found it even more challenging on a mental and emotional level.

Today, after experiencing two kidney transplants and 1,800 haemodialysis sessions, I’m in a much better place. I’ve been lucky enough to become a public speaker highlighting the realities of living with a long-term illness and overcoming adversity.

Today, when I think about the importance of mental health when coping with kidney diseases I look at three stages we need to consider:

Firstly, Acceptance. When we understand and begin to accept our kidney disease, we can move forward with our lives in all its limitations and challenges.

Next, our Attitude. As hard as it may seem, we need to create a positive, forward-thinking attitude that again considers the realities of living with kidney disease. We need to see the potential we have to thrive with the disease. Kidney disease can change us, but it can also inspire us to create a better version of ourselves. This attitude enables us to “live” with kidney disease and not “suffer” from kidney disease.

Finally, Action. Life has to be lived forward. Acceptance and attitude are merely words and wishful thinking without taking action to create better versions of ourselves. For me, action is vital. I credit exercise and becoming involved in the Transplant Games as pivotal in accepting my illness and a positive attitude. This is mainly due to meeting role models who inspired and taught me what was possible through their living examples.

I also won the 100 meters race. This prompted friends to humorously call me “The Fastest Sick Person in Europe!”

From my viewpoint, what I’d like you to understand is that coping with kidney disease is challenging and certainly a bit of a “rollercoaster.” Still, it doesn’t have to be debilitating.

We all have goals, dreams, and passions. If we look to our mental and emotional health, as our healthcare team looks at our physical health, we all have the potential to live well with kidney disease even in the most darkest of days.

Finally, you might “lose yourself” for a while on this challenging journey, but be assured, you are not alone. I did. The kidney community is a great community that is there to help you cope with kidney disease. There are loads of people out there who have been through difficult times, like you, and will gladly help you in any way, myself included.