my creatine is at a 2.6 and gfr is a 26 and i had a kidney biopsy and its too late to do cytoxen again so i will wait it out till dialysis. i am wanting to know if anyone is in the similar boat. Tell me what to expect. what the dialysis brings? Im scared but i know God would never give me anything I cant handle but this is trying. And who knows it may be 10 years before i need dialysis!! who knows Thanks
I wish I had some advice for you but I do not know much about dialysis. I am just so sorry to hear that you are going through this!! My thoughts and prayers are with you. Best wishes
I’m sorry for what you are going through right now. I don’t have kidney involvement, so I’ve never had to experience dialysis. That’s a tough road to be on and it’s understandable that you’re scared. I would be, too. Keep the faith.
I am at stage 4 Lupus Nephritis. This is how my Lupus was discovered as I am ANA neg. Wierd, right? When I saw my Rhuemy the last time I had definitely improved and was only putting out 6,000 times the amount of protein that is normal. How's that for improvement? My protein output was 13.94 when top of normal is .95.
Stage 5 is when dialysis is necessary. Knowing this is in my future, eventually I have looked into the two types that are typically done. One is done nightly while you sleep, the other usually in a facility 3 x's per week. I had a patient in the bed next to me at my last hospital stay that had it done and it took ALLLLLL day. Noisy, huge machine. I think I would prefer the overnight type, personally. Like you it may be years before I actually need dialysis, but your kidneys will need tender loving care until then along with your meds.
Like our disease, Lupus Nephritis is unpredictable. As long as your Rhuemy and Nephrologist(please make certain that you are seeing one) can control the output of iron and protein, it may never be necessary for you to have to have dialysis. The problem, as explained to me is that one of the meds that is commonly given almost always causes diarreah. This means that your kidneys are not holding the meds or the other nutrients that are necessary to maintain your bodies health and wellness.
Keeping your stress levels down will of course reduce your incidences of flares which will give your kidneys a rest.
Keep your spirits up and I will be thinking of you and please PM me anytime as it sounds like we are both in the same small boat.
XOXOXO,
DeAnne
There are truely some wonderful folks on this forum, so just keep in touch, share your fears, and talk things out as much as possible. I believe talking about this sort of thing is therapeutic. You know then, that you have the best wishes and prayers of all of us going with you into your situation, and down what ever road it goes.