ckd stage 4

Hi I am in the same boat GFR fluctuating around the 20 mark. I am also looking for some advice, have seen dietitian and that really helped. Think it is just getting your head around the fact that soon you will need a transplant and finding the best way to prepare your body and mind for it. Also goof to talk to family and get a plan in place for before and after the event.  good luck with your journey 

Hi Kate, can you give a bit more information on your diagnosis, did you have repeat bloods taken after the gfr 21 result? Had the doctor given a reason for the CKD? Guy 75306 has said he's preparing/expecting to end up having a transplant but this may never happen, alot depends on the reason for the CKD, I have CKD stage 3 and have been at that level for 17 years, mine is caused by a scarred kidney, no idea why or when this happened and my Gp says I may remain at this level forever. If you can give lots more information, others might be able to advise you more.

Yes true they can stabilise. I was only referring to my CKD and have been advised that I will definitely need a transplant.

Hello, kate71426. It is time to start making decisions while your GFR is still in double figures. You need to discuss dialysis and to enrol on the organ registry if that's the way you want to play this.

You really have to get your family involved in this, although the decision has to be yours alone. At 30, your priorities will be different from mine at 70+, but you have a lot of living to do.

My prayers are with you - God help you to make the right call.

Please let us know how things go when you next see your nephrologist.

Bert

The outlook is not necessarily so gloomy.  My GFR is 22% and has been for around 12 years now.  I'm 75 and try to keep well hydrated but my consultants do not advise any change in diet.  I get CKD related anaemia because my kidneys don't make enough erothropoetin which you need to stimulate your bone marrow to make red blood cells.  This is treated by intravenous iron about 1 x per year, 3-monthly Vitamin B12 injections and daily folic acid tablets.  I also inject EPO, the artificial substitute for erithropoetin.  It is not hard to do and keeps me going.

I hope not to need a transplant yet a while.

Hi kate lyn is right. Just look after yourself. My egfr has fluctuated between 20% and 12% for the last 15 years, I have actually been on the double transplant list (kidney/pancreas) for coming up to 9 years. I suppose I would put this stability down to a good support network from my family and my transplant co-ordinators ( plus the fact that I am a 55 year old stubborn devil, as my wife says). But a positive mental attitude is a massive help, sometimes that seems hard but it does help. Good luck!

The sad thing is they keep pushing for the double transplant, which means I can only get the pancreas when someone passes away and this transplant is one of the rarer ones. My brother came forward as a donor, went through all the tests but sadly got diagnosed with throat cancer so wasn't allowed to donate. I think because I push myself and am still working the are leaving me alone. People see me and think there is nothing wrong with me, I walk upright (not stooped over) and keep a smile on my face (not a pained look on it). As for the dialysis that usually comes when the egfr goes below 10%. Like you I have had the iron infusions and was also on monthly injections of arenesp ,but the tiredness is still there. That really is the worst part.

Kate, my renal function is now down to an eGFR that fluctuates from 16-20. So I understand at least some of what you're probably experiencing; although, I just turned 65. I would suspect they will want to test you for transplant eligibility at some point in the not too distant guture. 

As for me, I'm working to pull some weight off. It's tricky with the severe anemia I now experience. The treatment keeps me functioning but not overly active. That and the low potassium diet that severely restricts my fruit and vegetable intake have made weight management challenging. But I'm trying.

However, regardless of whether I'll qualify for a transplant, I have decided that I will try PD dialysis. Bert is right. This whole treatment decision has to be yours and it's such an individual decision. I found it helpful to visit with persons participating in this forum about their treatment decisions as well as why they decided to do what they have done for treatment. Some have chosen conservative care (no transplant , no dialysis), others have chosen dialysis, others have chosen a transplant.

But all have shared openly and honestly when asked. I can't overstate how deeply I appreciate that nor how helpful I have found their comments--all of their comments.

So, please ask questions, share thoughts, concerns, worries. 

Marj