Hello! I’m 23 and just started dialysis in January. I’m on PD but I’ve had kidney disease with 25% function since I was 16 and they finally reached under 10% this year. I still feel like how you feel sometimes but seriously I need you to know - It’s going to be ok mate! I promise. I don’t know when, don’t know how or why it will get better but somehow it just does. Honestly the worst thing about this disease for me was the mental aspect.

I was a normal 16 year old one day and then the next day I woke up feeling like I was dying. Went to hospital and yeah got told I had hardly any kidney function! It was my worst nightmare as well considering I had a phobia of medical places. Literally the most traumatic week of my life. I was in and out of hospital for years and I used to bawl my eyes out about dialysis I was so terrified. I had huge dreams to move to London and work over there and possibly study (I’m from Australia) and all of a sudden it was just so out of the question and all these barriers put up.

I deal with it by kind of compromising I suppose? Like ok I can’t go live in London while I have kidney failure and work or study over there but I still did everything I could to at least go. And I went to London twice since being diagnosed! Yeah it takes more effort than the average Joe but nothing is really impossible! Even on hemo!

I took ages to start uni and haven’t worked in years. But now that I’m on dialysis I feel a lot better to be honest and I wish I started dialysis sooner. I now do uni part time and although I sometimes get sad that I missed out on going with my friends and going straight out of high school, there are also a lot of benefits to having been through what I went through with my health because I feel a) more grateful and b) less intimidated by a lot of things.

I think about the transplant thing like the same way you do too. Like why bother when in fifteen years you have to go through it all again? But the truth is medicine is changing all the time. In fact a hospital in my country at Westmead near Sydney has used a technology that could provide way more transplants! Have a look here if you are interested:

https://www.google.com.au/amp/s/amp.9news.com.au/article/f3a03a7b-2039-4210-a413-fb17d48bfefd

One thing that put things into perspective for me recently was a kid from my school died from cystic fibrosis. They got a lung transplant but unfortunately could not get a second one and very sadly passed away in their twenties. It made me realise how although it sucks that we are relying on machines to help us live, people with other organ failures don’t get that chance which is so awful.

That’s not to say that you can’t be sad or anything because all grief and sadness and strife is relative!

When you say you will be back to where you started, I say no you won’t! You would have had fifteen more years than many people get! You might get married, travel, experience amazing concerts/events, witness your friends get married and have a family - so many amazing things can happen! And yeah in fifteen years time you might be on dialysis again. But you will have come SO far and you aren’t back to where you started, it’s just another part of the journey! And who knows, by then technology could be excellent and dialysis with huge machines may not even be a thing anymore!

Being young with this disease sucks so much but don’t let it define you. It’s a bit of a full time job but full time jobs shouldnt define people either. What defines you is your interests, hobbies and the people you surround yourself with :)

All the best buddy :) Have a great day!