Melita Fragomeni

I was born with PKD which was discovered in utero as a result of direct family history with the illness (in other words, it was passed down to me from one of my parents, and passed down to them from their parent/my grandparent as it is a genetic disease which doesn't skip a gene). Throughout my life growing up I went to lots of different hospital appointments and thought that every kid also did that. It was only a few years into my teens where I gained a broader understanding of how the disease affects people and the severity of it over time. 
When I hit my 20s, we started to see a more rapid decline in my kidney function, My kidneys were getting larger, the cysts were multiplying further and enlarging, and the things in my body that used to work fine were starting to shut down. I had high blood pressure, chronic anaemia (which affected me the most at the time), eventually my vitamin D receptors stopped working properly too...the list goes on to be honest.

By the time I was hitting the early stages of renal failure, I was vomiting nearly every morning before work, suffering from severe brain fog, severe fatigue and eating food would make me feel sick and I could barely stay awake.

Something I feel like people should be aware of is that kidney failure looks different for each patient. I fully convinced myself that I 'must not be sick enough to start dialysis yet'. I had tried to prepare myself for 'the moment I needed to start dialysis'. I anticipated that I would stop peeing, fill with fluid like a balloon, and not be able to walk to the fridge. That's not actually what it looked like in my case.

I left my job in the lead up to dialysis when my kidney function was at about 9% - I couldn't keep up with it anymore and I was quite sick on the inside but looked fine to all my co-workers on the outside, minus making constant dumb mistakes on the job. The weeks that followed had me telling myself and my Mum that 'maybe I'm just suffering from burnout'. The days went past and all I could do was sleep for most of the day, wake up, do a small task or go out for a quick errand, and sleep again for several more hours. When I WAS awake, I was nauseated. My Mum was concerned and asking me if I was okay. I kept telling her I was fine, she was not convinced. I told her "Come along with me to my hospital appointment on Monday then if you're worried, I'm sure it'll be fine". So, she did, and off we went. 

The second I walked into that appointment and sat down, my blood results were on the computer and my kidney doctor said "So, dialysis?" (I wasn't actually going to have a choice, my blood was very filled with toxins and my eGFR was at 6%). Within 48 hours I was at my first dialysis session.

Dialysis has been a challenging thing to adapt to but I've taken it in my stride. I was convinced that once I settled into it I'd be able to just schedule my treatments in my own time once learning how to do it all at home and be able to work at my normal capacity, that I wouldn't be unemployed for very long and all would go back to (mostly) normal. I learned sooner rather than later that while some people can manage that, for now I'm unfortunately not one of them. I don't have the energy or general wellness to hold down work even if it were light duties (and as somebody who worked from the age of 15 up until last year, I feel self-conscious about it, as if people will think I'm lazy or putting it on because my severe illness isn't directly visible when you speak to me face to face). I'm forever reminding certain friend groups that I cannot/do not drink when prompted to, I STILL have to nap several hours a day more often than not due to severe chronic fatigue, The treatment has a tendency also to wipe out a lot of us patients for up to around 16 hours afterwards, and while I'm one of the luckier ones who doesn't have a harsh fluid restriction for the time being, I do have to adhere to our favourite friend, the kidney friendly diet (I do miss having large amounts of potato in particular). It's a lifestyle change, and it can at times feel like your life is on hold, because a lot of the time, frankly, it is. You're on life saving treatment (we will die without either dialysis or a transplant) 12 hours a week and most people can't actually tell.

I do try to exercise when I can muster up some energy for short periods- just not high intensity because I can't handle it or any heavy lifting due to the fistula in my arm. The Red Socks Run is a great opportunity for EVERYONE, but also kidney patients who maybe can't work or work much, or do high intensity activity to try and get out and about and just get some walking in (or running if you feel comfortable enough) while supporting our community and raising awareness.

While I'm trying to reach 60KM over the month, I'm reminding myself that it's a big task when this unwell and to not beat myself up if I don't make that exact target, but to just try my best. 

For example, the last week and a half fell through because my symptoms were quite heightened/present and I've been trying again over this weekend

To anyone reading this, if you are interested and feel afraid to take on the challenge, know you're not alone and if you can, just try! It's an important cause, we can raise money to help so many people and aspects of our community and teach people to look after their lil kidney beans (a lot of people don't seem to know what their kidneys actually do - the answer is so much).

Happy fundraising,

- Mel.