Prepare for dialysis.

[Irelandy]

Hi all, my egfr dropped from 17 last September to 14 and I have been told to prepare for dialysis. Is it too late to improve on this figure? And what can I expect from dialysis. Will my energy levels improve? Any comments or suggestions will be appreciated.

[Bassetmommer]

There are so many factors for why the kidneys fail. Has someone gone over all your medications to make sure they are kidney friendly. Do you follow a good renal diet and spoken with a dietician to help you figure out the best foods for you? How's your weight? Do you drink sufficient water?I went from 13 to 15 GFR in three months by changing to plant based diet and losing some weight.

[Irelandy in reply to Bassetmommer]

Thanks for your reply Bassetmomer. Your advice is really good and has served as a wakeup call and I will stick to a plant based diet. I don't eat prepared processed meals. I probably eat too much cheese whick I love. When I look back over my results I can see that in the past I managed to raise my egfr by 3 points.So I need to be extra vigilant.

[rabbit01]

In my experience doing peritoneal dialysis has been great. I feel so much better. I kept putting it off and didn't start till I was at 7% but in all honesty I should have started earlier. I don't know anything about haemodialysis other than I didn't want to do it.

[Irelandy in reply to rabbit01]

Thank you for talking the time to reply. It is very encouraging to know that it made you feel better. I am exhausted all the time....feel 20 years older than I am (67).So many people seem to give dialysis a bad rep.

[rabbit01 in reply to Irelandy]

Well hopefully you won't need it for a while but if despite everything your numbers keep dropping then don't put it off like I did. If I had of started peritoneal dialysis when I had more of my own kidney function then the amount of dialysis I need to do would have been less. In my experience the doctors do a rubbish job explaining all this to you. I would have loved to have had access to talk to a real person on dialysis when I was going through all this. To me the thought of dialysis was overwhelming and at one point I was not even going to bother. I am so glad I did. You take care and stay in touch.

[OperationKidney]

Like others have said there is a variety of reasons for failure, but dialysis isn't really anything to be afraid of. For me it was a chance to turn things around and feel better. Everyone reacts differently of course but I hope that dialysis is the same relief for you.

[Irelandy in reply to OperationKidney]

Thank you for talking the time to reply Tesslafera. It is encouraging to realize that dialysis is all bad news. I have read several other reviews that say the same thing. I still have an opportunity to increase my egfr which I will attempt to do, but good to know that dialysis can actually improve things 😄

[OperationKidney in reply to Irelandy]

Absolutely! I'd recommend classes too, Fresenius here in Colorado holds them so I would hope that that is nation wide. Worth calling to ask anyway. Best wishes!

[Irelandy in reply to OperationKidney]

Unfortunately I live in UK so I cannot access the talks but I will Google him and see what comes up, thanks again 😊

[ILMA54]

My experience was that in a period of about 6 months my eGFR dropped from 18 to 11. At that point, I was seeing my doctor every six weeks and had been on the transplant list 6 months.

My doctor suggested I go visit a dialysis clinic to undergo an orientation into the process, with no intimation I would be starting imminently. When. I got there, they were under the impression that I would be starting dialysis soon. I should also note that I still felt quite good with no real noticeable side effects.

That sudden drop over six months (after having a decade with my eGFR in the mid-high 20s) really shook me. I immediately implemented diet changes (though because of low ALB < 3.4, I was actually eating 80-100 mg of protein a day to raise my ALB). I started to exercise, and tried fo zhed a few pounds, which was difficult because I was traveling 50% for work. based on these changes, I was able to raise my eGFR to ~ 15.

That was 27 months ago. Since then I have remained between 12 and 18. Duuring Covid, i started working from home, dropped 25 pounds, and began swimming 3-4 days per week, which has helped immensely.

I am hoping for a transplant by year-end, Based on the progression of my disease, I am losing 2-4 points of eGFR per year, so we think I still have some time (~2 yrs) until I would need to start dialysis.

In hindsight, the thing that led to the drop was my blood pressure. I had to change BP meds, and they were not keeping my BP as low as it had been. With those BP med changes, I have been far more stable.

Hope this helps.

[Irelandy in reply to ILMA54]

Thank you so much for your advice ITMA57. I think I'm at the same place you were reorientation for the process. Ii shall find out June 21, but until then I will watch my diet carefully and try to loose some weight...I'm 6 foot tall and weigh 218 lbs which is far too much.You didn't say if you got put on dialysis or managed to avoid it by implementing your regimen?

My results are all pretty good apart from egfr and creatinine. So I will seriously move to a plant based diet and cut down on my protein intake.

Thanks once again and good luck with your journey ☺️

Results

[kowal in reply to ILMA54]

what BP meds are you on? my does not work well? Geo

[RhenDutchess123]

Your Energy will definetly improve...and because you are on Dialysis you will be encouraged to eat Protien again...something our Pre-Dialysis bodies are starved of....they will give you iron shots and protein drinks to help you achieve better levels. .I do PD at night while I sleep and the rest of my day belongs to me...I started at 12 gfr...even tho I "thought" I did not have alot of symptoms I have noticed how bad I had actually felt but didnt realize it....I also worried to let myself get too low because the toxin buildup is so bad for the rest of our organs...so glad I did...

[Irelandy in reply to RhenDutchess123]

Thanks very much for your help RhwnSutchess123. I have been noticing my energy levels and stamina going down over the years. Nowadays I feel more like 87 than 67 so it's good to hear your experience. I like the idea of PD but I'm a very restless sleeper so it may not suit.No doubt I will get a lot of information when I attended the induction.

Again, many thanks 😊

[RhenDutchess123 in reply to Irelandy]

Stay well....

[Erifre]

Do what Basetmommer said and work closely with a renal dietitian. My husband had 3 great years with a GFR below 14. Our nephrologist suggested to check a dialysis clinic and to be prepared for starting the treatment while he was feeling ok to avoid beeing rushed to the ER because of kidney failure. This is important so you can be able to choose either PD (peritoneal) or Hemodialysis. At the same time he went through the protocol for being listed to get a kidney transplant. We started dialysis 9 months ago and he feels great, we even travel with our cycler out of the country!, I became his assistant, cycler technician, cook, pharmacist, physician’s appointment planner, etc. I am so happy to see how he feels. He turned 51 yesterday. Some doctors use to say that the average time people can live with dialysis is 5 to 8 years, but that depends on how much you care about what you eat and how you take care of your treatment. Here in the US we have the 2nd world Guinness record of a lady in San Antonio (42 years in dialysis!). We know people that has been getting treatment for 20 years, so, if dialysis comes earlier, don’t be scared, embrace life and enjoy it! Life doesn’t stop with kidney disease, you will have an extra tool to help your kidneys. Stay safe, happy and active!😊

[Irelandy in reply to Erifre]

Thank you so much for taking the time to reply to my post. Diet seems to be the best thing to do to control the egfr and until I hit 14 and put up the post I must admit I had become very lax.I live in N Ireland and we have been in a tight lockdown for six months due to covid-19, though we have been more or less isolating since March 2020 because of my condition.

Your husband is very lucky to have you taking care of him, please pass on my best wishes and thanks again 😊

[Erifre in reply to Irelandy]

My pleasure!, most of us have been through tough times, but these help us to remind us how strong we are, so cheer up, watch your diet and keep your eGFR up as much as you can, and when the time comes be sure to have your research done. We both send you our best wishes and all the good vibes!, stay positive

[alport45]

All the advice you've received so far seems helpful. I can only add my own experience. I had gfr under 20 for several years. I could usually raise it a few points by making sure I was not dehydrated. My nephrologist always credited my poor labs to my not having drunk enough. Diet never seemed to make a difference, but then I don't vary from a strict renal diet by much. Took both potassium and phosphorous binders. All of these helped me avoid dialysis even with low gfr. I had decided that I would not start until I felt bad. I had none of the usual symptoms. No swelling, no loss of appetite, no itching, normal energy, controlled BP. Pressure from doc but I'm glad I waited. Finally found I felt weaker and was sleepy during the day and dropped to 7 gfr for 2 subsequent labs. Of course you are the ultimate decider of your health care. Research your situation til you become an expert on your own case and then make the decisions that are right for you. The posts here, your doctor's advice and your research into kidney disease, along with your personal needs are all factors to consider and integrate into decisions. Good luck and take care.

[Irelandy in reply to alport45]

Hi Alport 45, and thanks for your reply.I, like you, have no loss in weight/appetite, but I do suffer exhaustion and tire easy. I've already made some changes to my diet....no red meat and at least two veg meals a week.

How long did it take your efgr to drop to 7?

Are you presently on dialysis?

Good luck on your path and thanks again 🙂

[alport45 in reply to Irelandy]

I started PD about 3 weeks ago. I hope it makes me feel more energetic. Too soon to tell. It took me 20 years to go from gfr in the 30s to get down to 7. I was diagnosed with kidney disease when I was an infant so I've ha d a lifetime to progress to ESRD. I'm glad to hear the plant based diet is working for you. Have you decided what kind of dialysis is right for you?

[Irelandy in reply to alport45]

I have an induct on on June 21 and will probably decide after that but I'm leaning towards HD as I'm a poor sleeper. My energy levels are very low and I feel more like 87 than 67.I hope your energy levels start to improve as the dialysis progresses.

Very best wishes to you 🤗

[blancaclaudia]

Diet changes + physical activity has helped me buy time. Both are necessary. My count is 11 but I feel fine so far. I have a fishula in my arm. I believe everyone has to everything possible themselves BEFORE dialysis.

[Irelandy in reply to blancaclaudia]

Thank you for your advice, I have made some radical diet changes, but I'm afraid exercise is out for me as my energy levels are very low. I have an appointment with the low clearance clinic tomorrow so should know if there's been any improvement. Good luck on your journey❤️.