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Diet with FSGS
- By jyakubov · New reply 7:09 pm
- Discussion in Adults with FSGS · 3 replies
- I am new member to this site-- I just recently got diagnosed with FSGS about a month ago. I have not yet started treatment (specifically prednisone) because I want to get 2nd and 3rd opinion from other ...
The Time before Dialysis/Transplant
- By smile213 · New reply 6:07 pm
- Discussion in Adults with FSGS · 29 replies
- I would like to ask about experiences with the period of time right before dialysis/transplant is necessary. How was it decided that it was time for this? Were there physical signs? How high was your ...
how long on cyclosporine when it does not work anymore? than what????
Prednisone taper and joint pain
- By TxSaphyre · New reply 5:22 pm
- Discussion in Adults with nephrotic syndrome · 3 replies
- I have read many posts on joint pain in this forum but I didn't find any that really "hit the spot" so to speak. I was on 80 MG of pred every other day for 6 months. My neph scheduled my taper as follows ...
Things I took for granted pre-steroid...
- By buffie · Posted 5:15 pm
- Journal · 0 replies
- My normal sized head...I've tried everything to shrink it...even saying "beetlejuice" 3 times. nothing works. My breasts being larger than my stomach! AARRRGGGHHH!!! Non-steroid influenced road rage...a ...
a "cure" for FSGS?
- By DennisD · New reply 5:10 pm
- Journal · 21 replies
- Hi everyone - I was reading some of your posts and thought I would join to share some info you might be able to use. I am 59 and have been diagnosed with FSGS for a little over 5 years. The first year ...
Heading Towards Transplant Road
- By kalebsmommy · New reply 2:57 pm
- Discussion in Children with FSGS · 5 replies
- My son was diagnosed with FSGS this summer. His kidneys showed 50% scarring. They took him off of prednisone and put him on cyclosporine, but that was ineffective. A month ago he was given a peritoneal ...
Phosphorus binders
- By MooseMom · New reply 1:17 pm
- Discussion in Adults with FSGS · 3 replies
- Does anyone here take phosphorus binders? My mother is on dialysis (doesn't have CKD, but instead has no renal function because of unrelated surgery), and she has to take them, and she just does not get ...
What if we get Swine Flu?
- By MooseMom · New reply 1:08 pm
- Discussion in Adults with FSGS · 5 replies
- Ok, so we all have an underlying medical condition, and I am assuming that at least most of us are immunosuppressed, meaning that we need the H1N1 vaccine, right? I volunteer at our local hospital, just ...
Tell me about your neph
- By MooseMom · New reply 10:30 am
- Discussion in Adults with FSGS · 18 replies
- I'm just curious... We're all in this for the long haul. Our nephs (and their usually unlauded assistants) become very important people in our lives and will probably remain so for a long time, if not ...
food ideas, recipe staples and meal info
- By SJsMom · New reply 9:55 am
- Journal · 4 replies
- I have been meaning to post this info for quite some I have tried to compose a list of our household staples for a low sodium diet. My daughter has chronic kidney disease (fsgs and mn for all of you kidney ...
Having a very very bad day!
- By SpenciesMom · New reply 9:53 am
- Discussion in Children with nephrotic syndrome · 18 replies
- I am just so tired of all this NS stuff. Why can't my son be NS free? This is so unfair. My son was diagnosed with nephrotic syndrome in November of 2007. He has been on steroids since then. Currently ...
Help
- By littleflowercure · New reply yesterday at 8:31 pm
- Discussion in Adults with nephrotic syndrome · 2 replies
- My father is in ICU right now. He is stuck in a continous afib loop, Dialysis, edema, olcers, he is type A positive, it came on suddenly, He is on predisone, lasix, sorry my spelling stinks. I feel like ...
What does remission really mean?
- By SoaringHigh · New reply yesterday at 6:16 pm
- Discussion in Children with FSGS · 7 replies
- I know this may seem elementary but I am just not getting it. I guess our recent understanding is that if the kidney tissue is scarred (FSGS), it is permanent and can't be reversed. If the damage can't ...
secondary FSGS
- By lookonthebrightside · New reply yesterday at 5:04 pm
- Discussion in Adults with FSGS · 6 replies
- Hi, I was just diagnosed today with secondary FSGA. My doctor made it seem like i was lucky i was diagnosed with this and not something else. I have spent the day researching online and i am seeing that ...
SPILLING QUESTION
- By BABYWITHFSGS · New reply yesterday at 12:10 pm
- Discussion in Children with FSGS · 3 replies
- My son is spilling 3+ but he has no swelling! He just got over a relapse about 2 months ago at that time still had no swelling! What does that mean is he still in a somewhat of a remission? In the past ...
Membranous Nephropathy are my results
- By Alfonso123 · New reply yesterday at 11:59 am
- Discussion in Adults with nephrotic syndrome · 12 replies
- I got the results of my biopsy, the Neph says membranous nephropathy, but the report says membranous glomerulopathy?? Looks like I have less than 10% scaring. I was told about 1/3 of cases go into remission ...
I was healed of Nephrotic Syndrome by God
- By I-am-a-testimony · New reply yesterday at 11:51 am
- Journal · 13 replies
- I was diagnosed of N/S at the age of five battled for a long time and got healed at the age of eighteen. With God all things are possible ...
Help the Albumin Levels are not higher!
- By SoaringHigh · New reply yesterday at 11:42 am
- Discussion in Children with FSGS · 10 replies
- My son 13, has new diagnosis of fSGS and has been on prograf and 2 blood pressure meds for 4 weeks now. We are tapering his Prednisone down where he only has 3 doses left. His blood work from this week ...
Home dialysis Vs. Clinic Dialysis
- By MollyB · New reply yesterday at 10:56 am
- Journal · 6 replies
- We have just watched a video by a company , BAXTER concerning home dialysis. The people interviewed were all positive. What are the short comings if any and are there other companies that offer the same ...
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The NephSpace Support Community connects patients, families, friends and caregivers for support and inspiration. The NephSpace Support Community is sponsored by The NephCure Foundation in partnership with Inspire.