anybody young people with ckd? reassurance?

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xocool_kidxo
Posts: 3
Joined: Fri Jun 23, 2023 12:20 pm

anybody young people with ckd? reassurance?

Post by xocool_kidxo »

Hi so I’m going to try and keep this short, essentially I’m feeling like I’m the only one my age whose health is so shitty. And that having CKD is the worst thing ever because having to take medication for the rest of my life feels unfair and like a life sentence.
I had a disease curing transplant but now I have CKD as a result of the treatments and certain medications etc.
My main symptom is high bp - the good ol silent killer, and high protein in my urine.
I’m 25 and have been facing hospital visits since my transplant at 18 and I’ve dealt with it well. But nowadays I can help but feel sorry for myself because I think I’m the only one, that I’m the only of my friends whose sick and have to deal with chronic illnesses etc.
I know other people like me and similar ages to me exist but I think, because I don’t know of them or have ever met them, I feel this way.
My current medication is: Irbesartan 150mg BD
Soon to go on Forxiga because of the protein
wagolynn
Posts: 1359
Joined: Thu May 23, 2013 2:49 pm

Re: anybody young people with ckd? reassurance?

Post by wagolynn »

Hi,

It would appear your high BP is the major problem, are you doing all you can to improve this?

Get salt /sodium down low - basically no extra salt on food, look out for pre prepared food as most have high salt content.
Breakfast cereals have salt in, the only ones I have found without salt are Oats, and Shredded Wheat
General diet - the 5 a day diet (look it up) is as good as you can get.
Exercise - say 20 mins brisk walking per day, by brisk I mean, if you can talk and walk try harder.

As far as I know, living with a transplant beats being dead any day!

Best wishes.
Thumps
Posts: 1301
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: anybody young people with ckd? reassurance?

Post by Thumps »

I hear you - I got diagnosed with CKD at 19, been medicated since 24, had tx and all that. It's horrible feeling like everyone else in clinic/on ward is so old.

Most kidney units have a young persons' group, and I know the Kidney Charities do.

I'm in. my 40s now but I vividly remember feeling as you do - best strategy I found was to educate my friends while being upbeat, I was fortunate they chose to stickby me and help me.

Good luck
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
xocool_kidxo
Posts: 3
Joined: Fri Jun 23, 2023 12:20 pm

Re: anybody young people with ckd? reassurance?

Post by xocool_kidxo »

wagolynn wrote: Sun Jun 25, 2023 3:33 pm Hi,

It would appear your high BP is the major problem, are you doing all you can to improve this?

Get salt /sodium down low - basically no extra salt on food, look out for pre prepared food as most have high salt content.
Breakfast cereals have salt in, the only ones I have found without salt are Oats, and Shredded Wheat
General diet - the 5 a day diet (look it up) is as good as you can get.
Exercise - say 20 mins brisk walking per day, by brisk I mean, if you can talk and walk try harder.

As far as I know, living with a transplant beats being dead any day!

Best wishes.
Hello, thank you for replying
I consider myself very healthy since having the transplant - I am also so grateful to have had it.
I go to the gym 8 times a month, I’d go more if it wasn’t for my job in healthcare because it’s shift work. So exercise and getting my heart right, isn’t an issue. But I guess I could do more diet wise. I completely eliminated salt from my diet since having an AKI after my transplant. But I guess you made me realise that there’s so many other hidden salt sources.
So thank you for opening my mind
xocool_kidxo
Posts: 3
Joined: Fri Jun 23, 2023 12:20 pm

Re: anybody young people with ckd? reassurance?

Post by xocool_kidxo »

Thumps wrote: Sun Jun 25, 2023 8:51 pm I hear you - I got diagnosed with CKD at 19, been medicated since 24, had tx and all that. It's horrible feeling like everyone else in clinic/on ward is so old.

Most kidney units have a young persons' group, and I know the Kidney Charities do.

I'm in. my 40s now but I vividly remember feeling as you do - best strategy I found was to educate my friends while being upbeat, I was fortunate they chose to stickby me and help me.

Good luck
Hello, thanks for replying to me and that you can relate
I’m a little bit reluctant to tell my friends in case they would judge me as different. Plus I’m a bit shy about it to be honest!! Only one of them knows about it.
Unfortunately, my hospital doesn’t seem to have this young persons group or forum.
I’ll just get on with it to be honest, it’s nice to know I have this forum though. 😁
JMan
Posts: 3467
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: anybody young people with ckd? reassurance?

Post by JMan »

Hi

I've had CKD most of my life and my 20's and 30's were the hardest.

You might want to check out https://www.facebook.com/groups/524969824300628/

You might also want to check out the Young Adult Group from Kidney Care UK..

https://www.kidneycareuk.org/get-suppor ... roup-yakg/

Get on with it if you can, but know there are others and support out there..

PM me if you need a chat. I may be in my 40's now but def remember uni and relationships being a hell of a challenge!

Good luck
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
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