in need of help

[schuler2559]

i was 18 years old when i was diagnosed with kidney disease and had no idea now i am 20 years old and in stage five kidney failure

[Charlene_Coxhead]

Hi Schuler

I was 21 when I was diagnosed at stage 4 and gfr of 20. I was told I was born with it which was shocking. I know how you feel it's overwhelming. I'm not sure if you are based in the UK or US. I live in the UK and I have to say I did really well at delaying my progression of kidney disease for many years. I'm fact I managed to delay dialysis until 3 weeks ago which was 10 years more than was expected. I had an excellent consultant and with medication, strict diet and fluid restriction and keeping active I did delay the decline. It was hard, and not everyone is as lucky and how ever much you follow what the doctors say you can't delay this disease. It's not that you haven't done the right things it's just the way our bodies are made no one person's disease is the same.

I have no idea about your diet or build, but in general you need to have a good healthy bmi, maintain a good blood pressure, good blood sugar levels, reduce sodium so no adding salt and try and reduce the use of ready prepared sauces and meals and only have takeaways as a treat, this mean cooking all your own stuff but it can be fun, and you learn to batch cook. Not sure about your potassium levels but usually kidney patients have high potassium so watch that. I actually have low potassium which is why i say everyone is different. If you can stay active that's good to, as it keep the heart health which Unfortuntly often suffers with renal disease.

Consult your doctor before making changes and ask to see a dietician.

I hope this has helped a little to reassure you I spent 10 years in stage 5 so it doesn't mean dialysis is around the corner. Listen to your body it will tell you when it's time for dialysis, some people need dialysis at gfr of 12 other 8 and some 5 or lower, it's not always about the numbers. My gfr was actually 2.5 when I started but that was because I got issues with my fistula that needed repairing the plan was at 3.5 to start.

Good luck and don't forget your not alone

Charlene

[Gotthecall_123]

Hi my name is Dave I was on dialyses for 7 years a long 7 years the reason my kidneys failed was because I’ve been a type1 diabetic for 36 years I was diagnosed with diabetes at age 20 then at age 49 my kidneys failed,9 months ago I got the call for a transplant.so be brave stay strong and most of al never give up god luck💪🙏😝