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Inspirational e-mail

fsgsblahs
  • By fsgsblahs · Posted yesterday at 7:10 pm
  • Discussion in Adults with FSGS · 0 replies
  • There was a blind girl who hated herself because she was blind. She hated everyone, except her loving boyfriend. He was always there for her. She told her boyfriend, 'If I could only see the world, I ...

Strep Throat

linda717
  • By linda717 · Posted July 22, 2008
  • Discussion in Adults with FSGS · 3 replies
  • Are we just less immune than your average person, who gets strep in July?? ME! Anyone else sick of being sick, another pill oh boy! I want to wake up one day and feel great! Someday this will happen and ...

Diets

Mrs_M
  • By Mrs_M · Posted July 22, 2008
  • Discussion in Adults with FSGS · 3 replies
  • My husband has Advanced FSGS. We are not on a particular diet (we should be). We "try" and watch his sodium and protein intake and its so hard. I love Vegeterian type dishes, and I am a meat eater! When ...

Medical Alert ID's

jlinsanjose
  • By jlinsanjose · Posted July 22, 2008
  • Discussion in Children with FSGS · 2 replies
  • With the limited amount of space, what information have people included on their ID's? Obviously, the wearer's name should be included. But is there space for emergency contact, allergies, medical condition ...

MCD Study

amelieMA
  • By amelieMA · Posted July 21, 2008
  • Discussion in Adults with nephrotic syndrome · 6 replies
  • I would like to share with all of you who have been diagnosed with MCD this elaborate study that I found. There are not that many studies done on this disease and our impression is that there is quite ...

Secondary FSGS

RiverWhispering
  • By RiverWhispering · Posted July 20, 2008
  • Discussion in Adults with FSGS · 3 replies
  • Can anyone please tell me what is the difference between Secondary FSGS and FSGS? I have secondary fsgs and have no clue. Thank you, River ...

Passing out?

Aweson-son
  • By Aweson-son · Posted July 20, 2008
  • Discussion in Adults with FSGS · 12 replies
  • Okay, I passed out again last night in the middle of dinner. This is the second time it has happened. Nobody can figure out what is going on. This scares me after reading the post about strokes. They ...

Diagnosed with Alports

newmom2007
  • By newmom2007 · Posted July 20, 2008
  • Discussion in Adults with nephrotic syndrome · 0 replies
  • Hi my name is Kelly and I am new here. Been kind of a lurker until I got the results of my biopsy. I was just diagnosed with X-Linked Alports Syndrome. I also have nephrotic syndrome. I was misdiagnosed ...

thyroid problems

reginapatricio
  • By reginapatricio · Posted July 20, 2008
  • Discussion in Adults with FSGS · 8 replies
  • Do any of you have thyroid problems? My memory is slipping and I don't remember if ya'll did say so or not. I was just dianosged with this and I don't much about it. My doc. is acting like its the end ...

Seattle 100 in Kent Washington

nnpalmer
  • By nnpalmer · Posted July 18, 2008
  • Discussion in Fundraise for NephCure · 0 replies
  • Hello Everyone, I just wanted to let you know about a great event that is happening on July 26, 2008 in Kent Washington. The Seattle 100. Last year my family and I had the pleasure to attend the Seattle ...

Started Cyclosporine today!

Aweson-son
  • By Aweson-son · Posted July 18, 2008
  • Journal · 11 replies
  • I started my first dose today. I went from taking next to nothing to taking a ton of stuff. My lasix were not working so they gave me some extra to boost it. I refuse to take steroids so I happened to ...

Wheatgrass Juice ???

hsenid_k
  • By hsenid_k · Posted July 18, 2008
  • Discussion in Adults with FSGS · 0 replies
  • Has anyone heard or tried out Wheatgrass Juice for kidney disorders? Some websites claim it heals kidneys. Is this true? Any input would be of great help ...

I am starting to keep track

Aweson-son
  • By Aweson-son · Posted July 16, 2008
  • Discussion in Adults with FSGS · 6 replies
  • I called my doctor today to see what my protein levels were. The reason I was so curious was because she had told me last Thursday that she thought I was not that swollen and not losing a lot of protein ...

Has Cellcept helped anyone?

hope4health
  • By hope4health · Posted July 16, 2008
  • Discussion in Adults with nephrotic syndrome · 6 replies
  • I'm wondering if anyone has been helped with Cellcept, and if so, what the course of treatment and improvement looked like. I started Cellcept at the end of March and have shown some improvement. I was ...

Trying for disability

Aweson-son
  • By Aweson-son · Posted July 15, 2008
  • Journal · 9 replies
  • I am trying to get approved for disability. It seems there is something every day that makes me feel horrible. I am frequently relapsing and it seems always throwing up. My neph is so sure the vomiting ...

MCD and Pregnancy

acemt2003
  • By acemt2003 · Posted July 15, 2008
  • Discussion in Adults with nephrotic syndrome · 1 reply
  • Hello all. Vanessa I have just read about you latest visit with your doctor about having babies. I too am interested in having children. Last week my husband and I talked with a high-risk OB at the teaching ...

Kidney Transplant question

Beth75
  • By Beth75 · Posted July 15, 2008
  • Discussion in Adults with nephrotic syndrome · 3 replies
  • I was wondering, if you do have FSGS it is pretty much a Kidney transplant down the road? If so, do they do transplants before you need dialysis or is that something that happens after? What happens after ...

July 9th, 2008 - Bill #HR6331 Passes

mamagemini
  • By mamagemini · Posted July 14, 2008
  • Journal · 0 replies
  • I received this from my senators office today on the petition I signed: Thank you for contacting me regarding legislation to improve kidney care. I appreciate hearing from you and welcome the opportunity ...

going to see Neph today

Beth75
  • By Beth75 · Posted July 14, 2008
  • Discussion in Adults with nephrotic syndrome · 10 replies
  • It has been two months and it has felt like a lifetime. I can't wait to see my results and really hope that my proteins went down and that the tekturna is really helping me. Though I just realized that ...

What makes it so different

reginapatricio
  • By reginapatricio · Posted July 13, 2008
  • Discussion in Adults with FSGS · 0 replies
  • Does any one know which one is different, between, MCD or FSGS? I have FSGS, (lucky me it took 8 yrs to get to GFR 71) with little knowledge of this disease. Between you guys and the sites you have suggested ...

You

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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.