Transplant soon

[Legomegamind]

Im 16 years old with stage 4 kidney disease. What is it like to have energy and not feeling tired all the time?

I’ve never had a opportunity to talk woth people in the same situation or have already been

[verdogo]

Sorry to hear ur at stage 4 and 5 at such a young age. I am 51 and bounce between 3 and 4. Welcome, and I hope someone can answer ur question!

[Legomegamind in reply to verdogo]

I was born with it at a high stage. The doctors couldn’t figure out what happened.

[rabbit01]

I am at stage 5 and my progression to this has been over a number of years. Without this forum I would have nobody to talk to who understands what CKD is like. I have made some great friends here and got good advice so I hope you do too.

[Donaldson0007]

Diagnosed at 15, and bounced around with annual visits then every 6 months, then some how in 2013 straight to failure so I did not know what it was like to fell (well) or (normal) either.

When I woke up, sometime around 11pm, I could not believe how I felt. Some of it may have been the medications, but I looked at all my family and guests and said "Is this how all of you feel ALL the time?! I feel like a million dollars!"

At home, recovery was slow, a lot of laying around, no driving, relying on others for a bit, but you will rally. Give it time and good luck to you.

[Legomegamind in reply to Donaldson0007]

Yeah the only down side to this i have to leave my friends to move closer to the hospital

[CNeb]

Sorry to hear you’re facing this at such a young age. I was diagnosed with CKD Stage 3 at 20 by chance. December of 2016, hit 20% function and got on the list. I’d say for 10-15 years out of the 20, I was tired all the time. The last year before my transplant, I had daily headaches, achy joints and muscles, edema, and beyond tired. When I had my transplant this past January, I felt like a completely new person. I haven’t felt this good in 20+ years, and I’m feeling so good I’m already back to running 3-5 miles. You will have some set backs, but don’t get discouraged. My family got hit with a stomach bug that eventually hit me so hard I almost lost my donor kidney. I have bounced back, but it takes longer now. Now that I have fully recovered, I’m back to feeling like a new person. I wish you the best!

[coaching]

Hi Lego,

I was diagnosed aged 17 and immediately i started hemodialysis. It can be lonely at times, thank God for this forum. I have even published a book about my experience on renal failure. You are going to feel so much better after your transplant and i wish you all the best.

We are here for each other.

Take care now.