LasVegasLover

[LasVegasLover]

I have been in stage 4 with CKD for about 3 years. So far, my numbers are remaining stable...which I am grateful for. Not sure if I need to be on this site yet, but I have a few questions. Can anyone tell me the average time from CKD diagnosis to starting dialysis or signing up for a transplant? Thank you!

[LasVegasLover]

Will do

[CatsAreTops]

for me, it was when my eGFR dropped below 10

[Bassetmommer]

It is hard to give an exact number because there is so much to it. They start talking about dialysis at GFR 20, but you do not need it at that point. Some docs say 15 and below, but a lot of people, including me go much lower. It depends on how you feel. I had no symptoms and felt fine. I should have waited, but my numbers were steadily going downward. I went on at GFR 7.

[Beachgirl32]

I went on transplant list before dialysis at 20 percent. Started dialysis about four years later. At 8 percent I did stay in stage four for long time.

[Oceanviewed]

I stayed in stage 4 for twenty years. Just got my fistula in May with a GFR of 15. No plans to start dialysis soon unless GFR takes a sudden plunge down. As to transplant seems like its important to get on the list asap. Im already too old at 83.

[Sapphire187]

I was in stage 4 for just under 1.5 years. My gfr is 13. I’m having surgery for my fistula in a few weeks. I’m feeling okay, so I don’t expect to start dialysis until that changes , and hopefully not before my fistula is ready to use. I got evaluated for a transplant when my gfr was 19 this past February and added to the transplant waiting list about 2 months ago. As others have said, how fast you lose kidney function varies from person to person. My CKD is caused by high blood pressure.

[LasVegasLover in reply to Sapphire187]

Mine is also from HPB. Threw me for a loop when I found out but mainly cause I went from good kidneys to stage 4 in less than 6 months. Thank you for sharing.

[lovemesomeflowers]

I went on dialysis when I lost my remaining kidney to cancer. Doing it for almost 4 years now. Transplant wasn't mentioned due to my age. I have done well, just keeping my hemoglobin up has been my worst problem.Just follow the rules & take medications as directed ,go for all treatments.

[SophieSkye]

my son had a kidney removed when he was 3 years old. He was born with kidney disease. Aged 26, his remaining kidney started to fail. At that point his egfr was around 20. I started the testing to donate and we were told once egfr hit 10, they’d transplant. Transplant took place July 9, 2021 when he was 30. Every body is different with CKD. If I was you, I’d get on that transplant list asap AND ask family / friends / colleagues if they’d be willing to donate. Start the ball rolling with the procedure… Good luck. Stay positive 🌻

[Darlenia]

SophieSkye has great advice. As soon as your eGFR goes to 20 or below, it's very important to look into getting on the transplant list. Some manage to receive a "pre-emptive transplant", completely avoiding dialysis. That's the best possible scenario.

Depending on the speed of eGFR decline, some can stay off on dialysis for a long time while others may not. As time moves on, doctors will set more more appointments and look closer and closer at the hard data - creatinine, BUN, blood pressure, etc. It at all possible, avoid "emergency" dialysis - requiring overnight hospital stays, temporary ports, etc. It's better to to select the type of dialysis you prefer in advance, get a permanent access started, and then be gently introduced to the world of dialysis. This can all be carried out on an outpatient basis, no ambulances and overnights required. This is a good site for examine re dialysis choices: mykidneylifeplan.org/#eyy

My husband went through emergency dialysis, experienced two types of dialysis, and then received a transplant. It's been quite the ride. We are very grateful he received a transplant. (If we had done it "right", he could have avoided dialysis altogether.) For transplant outcomes, this a good site to check: srtr.org/transplant-centers...

FYI: My husband's data when he was abruptly placed on dialysis - eGFR 6, Creatinine 8, BUN 114, blood pressure 240s/120s (bp went sky high virtually overnight).

You're asking questions - that's a great way to plan your journey forward. Kudos!