11 GFR, CKD5/ ESRD, preparing to get on Dialysis or looking for donor

[tthanawala]

Happy New Year Everyone.

Current GFR is 11. Creatinine is 5.5 (End stage/ CKD5). Was 3.5 last year Jan. No other health issue - Non smoker, no diabetes, no BP, no swelling in feet or arms. No known infections (unless doc are not telling me).

Was diagnosed via biposy in 2012 when Creatinine was 2.2!! Went through every possible known method to bring it under control.

Finally, went to New York Presbyterian (nyp.prg) in NYC and got eval'ed for being accepted on the deceased donor list.

Per my Nephrologist, there is nothing that can be done to reverse my condition, except go on dialysis or find a donor.

Please connect if you are in similar situation.

[Jayhawker]

I’m also in renal failure but am not yet on dialysis. I was also just recently approved for a kidney transplant and so am now on the waitlist. I’ve been told it will likely be between 2 and 2 1/2 years before I should expect to get “the call.” So at this point I’m just waiting and trying to stay as healthy and strong as possible as well as hoping to stay off dialysis as long as possible.

Jayhawker

[tthanawala in reply to Jayhawker]

Good luck.

[Ckd4]

Not stage five yet but condition at stage four is irreversible. Hope you get a transplant soon.

[Bunkin]

I am. My GFR is 6. On transplant list for almost 3 years. Not on dialysis. Fairly healthy and was told because I’m small could get 2 baby’s kidneys. Praying you find yours quickly 😀

[tthanawala in reply to Bunkin]

Thanks, appreciate it

[RhenDutchess123]

Labs are important...but how do you feel ?

[tthanawala in reply to RhenDutchess123]

I feel quite well. No health issues as such.

[Sammi_n_Munk]

Hello tthanawala. I’m sorry to hear about your situation. It is quite puzzling. Did your doctors, at least give you a hint of what they believe may have caused your kidney issues? Have you had a chance to perhaps, look into family history? I know we have heart issues on my mother’s side of our family. Practically everybody (our aunts and uncles before us, and theirs before them, and now, our cousins and ourselves) suffer from high blood pressure and type 2 diabetes. That’s largely the cause of my kidneys failing. I know that sometimes, the cause of kidney problems could even be linked to certain medications, such as NSAIDS (Non-Steroidal Anti-Inflammatory Drugs). Many over-the-counter pain meds like Ibuprofen (Advil and Motrin) can harm the kidneys, as well as Naproxen (Aleve). Also, Colchicine is a strong anti-inflammatory drug mainly to relieve pain caused by gout. It is also harmful to the kidneys, but my rheumatologists have told me that I require it daily, as my gout issue is chronic. I don’t have much of a choice if I want to enjoy some pain free mobility. Not sure if any of this will help you better understand the cause of your issue, but I do wish you all the best, and hope you get a kidney soon. God bless. 😊

[tthanawala in reply to Sammi_n_Munk]

Thanks for the reply. Until my kidneys showed decline I did not take any medications or NSAIDS. Other than my mom having diabetes there is no other history. No clue from doctors on cause of the kidney functions to decline -

[Kitz67]

I am on dialysis for a year and a half. Came on very suddenly wi little symptoms only blood work off kilter. I was not able to stop the progression with diet so am on dialysis. I keep as close as I can tolerate to diet and fluid restriction. At this time am not on transplant list but may decide different this spring as health issues were misinterpreted the time I was asked. Any more info I can help you with please reply

[DAF1234]

If your Egfr is 11 I would think your close . I started PD dialysis when my Gfr was 10. I also had no symptoms. I had the same concerns thinking it might be to soon. A couple of people mentioned it’s better to begin dialysis with no symptoms then to start with symptoms. It’s just easier to learn the process without feeling like crap. I’ve been on PD for 10 months now and have to say it is a breeze now. I perform the dialysis at night while sleeping and it doesn’t affect my life at all. I really don’t even think about it anymore. I spent so much time worrying before and now It’s like nothing. Good luck to you!!!

[Jayhawker in reply to DAF1234]

Wonderful! Thanks for sharing🐶

Jayhawker

[ThisAdventure]

Hi, I’m a few months post transplant now, but it took me two years to go from a gfr of 11 to when I was about to start dialysis at a gfr of 5. I felt fine, just tired towards the end, so I put off dialysis (working with my Dr) as long as possible, and managed to get a live donor the same week i had the pd catheter op scheduled and was blessed to avoid dialysis. So stay positive and do what you can to keep feeling well - eat well, drink water and reduce stress if possible. And remember that how you feel is really important - it’s not just about the numbers.

[Jayhawker in reply to ThisAdventure]

Thanks for sharing this—excellent

I’m hearing the same thing from my nephrologist—it’s about how I’m feeling and functioning along with my data!

Jayhawker