Introduction

[RJ68]

Hi, My name is Robyn. I'm new here, and wanted to introduce myself. I'm close to stage 4 and want to get information on dialysis (how it works) to make a better choice when and if that time comes. Thank You.

Have a nice day.

[coaching]

I Robyn and welcome to the group.

[Jodalena]

I'm just into Stage 4 (GFR is 29). In terms of outcome, hemodialysis is worst, then peritoneal dialysis, then deceased donor, and then live donor is the best.

[Patient-Empowerment NKF Peer Mentor NKF Ambassador in reply to Jodalena]

Agreed. Live donor kidney transplants offer the best outcomes and quality of life, for those who are transplant eligible.

[Patient-Empowerment NKF Peer Mentor NKF Ambassador]

Have you explored the option of having a kidney transplant rather than dialysis?

[RJ68 in reply to Patient-Empowerment]

I have not as of yet, I am only at the bottom of Stage 3, GFR 30 . I thought maybe to soon for that?

[Patient-Empowerment NKF Peer Mentor NKF Ambassador]

Yes, a bit too early. [I was proactive and was able to evaluated at 25 GFR. But I had to keep asking]. I focused on getting a transplant, not on needing dialysis. You can ask your doctor if he/she feels you'd be a good transplant candidate for starters, so you can focus on transplant as the goal. Dialysis should be your 2nd choice, not your first. Dialysis isn't a prerequisite to transplant.I avoided it all together and hope you can too. Hope this helps. Keep in touch!

[Landa1995 in reply to Patient-Empowerment]

My husband is 42 healthy other than IGA neuropathy . His doctor has made it clear that transplant is the best option. Due to 20 GFR we were referred to the Dialysis center to go over all option so we are informed when and IF the time comes. When we were there we were told that he should have been evaluated by the transplant center already. Doc says 19 GFR before we can go there. Any input on how we can get there? Thanks

[Lpgath in reply to Landa1995]

If you have a transplant center in mind (it's really up to you where to go), some will have an online application. Most will accept for evaluation at a GFR of 20 although some accept sooner. It takes time...so sooner you can get in the better. Just a phone call to the transplant center to see what you need would do as well. I had to ask my doctor to refer me because I looked on my own. I am at GFR 13, listed on UNOS 6/6, and in the process of testing living donors. My center is trying to rush me through as I've not been on dialysis yet and have living donors to be tested. I started the process at the beginning of April when my GFR was 18. I find that the transplant centers will try to get you through without dialysis if possible, but it seems sometimes doctors focus more on the dialysis centers. Not always of course, but just my observation. Best of luck!

[PUREkatniss]

When I was diagnosed with ESRD my doctor told me if they found it when it was at a lower stage like 2 or 3 they could have prevented it from getting worse and putting me on dialysis. Have you tried taking to your doctor about ways to prevent your GFR from getting worse? My doctors told me if I would have watched my diet my condition would not have got worse. So maybe watch your diet. Intake less potassium, watch your sugar intake (because the main causes for your disease to get worse is diabetes and hypertension), eat a lot of protein.

[PUREkatniss]

Also I am currently on peritoneal dialysis and honestly (in opinion it's not that bad). I'm not going to lie, when I first started it hurt like hell, but overtime you and your body get use to it and it's pretty easy. I do my peritoneal dialysis at night while I sleep so I pretty much sleep through it. When you first start you wake up at times at night. But once your body gets use to it, its an easy treatment and you sleep through it.

[RJ68]

Pure katniss. Thank you. I am currently watching my diet and having 2protein shakes a day. I spend 2 hours on the treadmill a day. Been put on blood pressure meds and vitamin D and was given a list of foods to stay away from due to electrolyte imbalance.

[PUREkatniss in reply to RJ68]

Great! Keep up and maintain that diet and exercise. Hopefully you won’t get it. Take care and keep us updated here.

[CNeb]

If you’re not on dialysis be careful about too much protein, especially animal protein. Pork protein is the worst offender. Too much protein attacks your kidneys, now when on dialysis it’s important to get protein. I’m currently End Stage, but majority of my levels are in standard ranges since I switched to a plant-based diet. I get all the protein I need through the diet, and after the change I’ve gained more energy, seen my BUN level go from 50+ down to 29, creatinine from 6 to 4.8. The change is what’s keeping me off dialysis for now as I wait for a donor.