I’m still holding on

[Beachgirl32]

I had my nephrologist visit today . My labs were all stable no symptoms of uremia , Potassium level was great only trace if protein in urine . My gfr did go down to 9.4 but I look and feel good no swelling in ankles . Only problem I have is a super migraine for two days but that because of the barometric pressure weather changing here. Of course my doctor said he has that effect on paients he give them migraines well I said I had it before I seen you or maybe cause it came in thinking of seeing you. He has a good sense of humor . He said I will see you in December. In January we will probably discuss putting in a pd catheter . If I feel bad before next appointment to call him .

[wheezoids21]

hi. That all sounds really good. You're like me in that my labs are pretty good for where I am with the disease. My dr keeps telling me that I should have this or that by this stage as most people she treats do. Can I ask how quickly your gfr decreased? Mine took 52 years to get to between 15 and 20 (it fluctuates with the seasons lol) so curious to know how quickly others are progressing. I wish I had a crystal ball sometimes as the not knowing when things will turn druves me crazy. I cant plant anything

[RonZone in reply to wheezoids21]

I'm with you on the crystal ball thing. I've got the pd tube in and still have no symptoms at my low eGFR, so it's a real mystery as to when someone should actually start dialysis while waiting for a transplant. Seems people are all over the board. Some start at eGFR 15, some start a eGFR 4, heard of one who started at 3. I have my pd catheter in, but am not currently on dialysis, and feel fine. I just "flush" it once a week to keep it in proper working order like you would do any plumbing device But yeah, it's been really hard to plan anything this past year. I also didn't plant anything this summer. Though I could've looking back now.

[wheezoids21 in reply to RonZone]

lol i meant plan, not plant. Damn teeny tiny keyboard. Ive gone through the whole 2 year process to be listed for transplant and have a voucher kidney waiting for me when things go south. I feel like im standing on the edge of a cliff just swaying in the breeze, waiting to fall over. Its weird the way one month my dr s thinking of prescribing me bicarb or epo injections according to my lab results but holds off for the next round of tests. So i brace myself for the change in routine and downward spiral, only to have my labs slip back into the safety zone again. Dont know whether im coming or going sometimes lol

[barbara55109 in reply to wheezoids21]

What is a voucher kidney?

[Beachgirl32 in reply to barbara55109]

like a pair exchange here a link it talk about voucher kidneyregistry.org/for-cent...

[RonZone]

Hey, really glad to hear you're feeling ok. As my doc says "Keep doing what it is that's helping delay dialysis". So you made it past the wedding, and now it looks good for you making it well past the holidays. I say that's a win win. For those of us who don't show symptoms (I'm at eGFR 5.8 and still not showing symptoms), it seems like stage 5 is a very long stage, but as wheeze said below, we sorta go through the first stages without even being aware of it a lot of times, or at least I did. Here's hoping you can stretch stage 5 out for quite some time. See what you can do!

[Beachgirl32]

I was in stage four the beginning of summer went to stage five the end of summer I was in stage four last few years I stay in stage three the longest. It is hard to plan things but I try to plan little things I can do in between doctors appointments. Just little thing I can do for enjoyment like I got ticket for concert the Mannheim steamrollers in November so I’m look really forward to spend good time with some friends that night .

[Dana66CKD in reply to Beachgirl32]

Sounds like you have a good attitude. Will pray you stay well and feel good for long time. You're doing the best you can. 🙏

[Tolmezzo]

To all: eGfr is not Gfr. This make huge difference. Recent study showed gap can be 30%!! This explain why sometime 5 is off dyalisis and 15 is on dyalisis. Especially when you are stage 5 never look only at creatinine but all values and symptoms.