How Researching CKD Has Improved My Journey

I was 2 years old when I was diagnosed with stage 2 chronic kidney disease. I am now 24 at stage 5, I've had a bit of time to find out what chronic kidney disease is and figure out my diet etc.

Wouldn't you think that being diagnosed in the earlier stages CKD give me an upper hand in dealing with my condition? I would think so, but that wasn't the case.

Growing up with CKD and having no symptoms I honestly was in denial most of my life. I had nothing to show apart from blood tests that didn't look very good.

When I started researching

It wasn't until I reached stage 4 (I only had a couple symptoms) that reality was starting to sink in. My kidney function was declining quickly and I didn't have any tools to deal with what was coming my way nor how I could slow the progression down or what was even causing the fast decline.

I wanted to understand what was happening inside of my own body and how I could give myself the best chance at reserving the function I had left. This was apart of the reason I stated to research. Initially, it wasn't of interest to me to research anything about CKD. I thought my doctors were telling me everything I needed to know.

Why I started researching

When you go to an appointment, doctors have this authority that you will listen to what ever they say and do what ever they tell you. It's like you submit to their care because you don't know any better.

Yes, doctors know a lot but you know your body. I never knew certain foods were spiking my blood results and potentially causing function to decrease faster, nor that being dehydrated makes my creatinine look worse, or even going to the gym before bloods, increases my creatinine. I also started researching to find others going through what I was, so I didn't feel so alone. I made a instagram page to share my journey (miss__ckd) and found hundreds.

Lastly, I came to a realization that there was something fatal happening in my body and I didn't understand a thing. What was causing it, what I could or couldn't eat, what my blood results meant, etc. It was causing extra stress on top of the stress CKD brings already!!

Top benefits of researching

After I started delving in CKD topics, benefits of doing so really started to pop up. Researching and looking at what was to come on my kidney journey helped me mentally prepare, for dialysis and transplant. I'm not saying at all that it makes it easier when you go through it, but you go into it with more of an understanding of what to expect.

This then lead to understanding my blood results, instead of waiting for a doctor to read them to me. I could follow up for my results and new exactly what they were talking about and this helped me to navigate my diet as I new when I needed to reduce my potassium and phosphate or drink more water.

Being able to understand my blood results took away the anxiety and feeling of the unknown. It gave me control to do what was needed to try improve my test results or look after myself better in general. Lastly, as mentioned before I have met so many new people along the way, which has made the biggest difference. It can be extremely overwhelming looking at all CKD has to offer. But I always like to say that knowledge it power. You've got this!