Journals

Started Cyclosporine today!

Aweson-son
  • By Aweson-son · July 18, 2008
  • 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 ...

Trying for disability

Aweson-son
  • By Aweson-son · July 15, 2008
  • 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 ...

July 9th, 2008 - Bill #HR6331 Passes

mamagemini
  • By mamagemini · July 14, 2008
  • 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 ...

Lost all faith in any doctors!!!!!

Aweson-son
  • By Aweson-son · July 10, 2008
  • 8 replies
  • Okay, I went to see my doctor today and I feel like she doesn't care. I watch kids at my house to make money so I can be home when I don't feel well and can somewhat relax. I have 4 kids at my house all ...

For those needing help with prescription drugs...

mamagemini
  • By mamagemini · July 9, 2008
  • 3 replies
  • take a look at this website: http://kidney.niddk.nih.gov/kudiseases/p ubs/financialhelp/ There is also: The Partnership for Prescription Assistance provides a website that directs patients, caregivers ...

One of those days...

mamagemini
  • By mamagemini · July 7, 2008
  • 12 replies
  • I woke up feeling sick this morning. Nausea, stomach cramps, headache, lethargic and the yucky D. Went back to bed for 4 more hours...until noon. Got up and went to get some food for the week and 7up ...

Tired of waiting

Aweson-son
  • By Aweson-son · July 7, 2008
  • 5 replies
  • I have been relapsing now for about a month. I have another month to wait to see the other kidney doctor, that my kidney doctor is sending me to. I am sooo tired all of the time and it gets old. I sat ...

FSGS - can she possibly stay healthy?

carrie63
  • By carrie63 · July 6, 2008
  • 16 replies
  • I have a fantastic 9-year-old daughter who was conclusively diagnosed three years ago with idiopathic FSGS. Despite a total lack of respose to every possible drug, and spilling 3/4+ protein the entire ...

Different types of FSGS?

mamagemini
  • By mamagemini · July 3, 2008
  • 9 replies
  • Someone posted the definition of FSGS and it got me looking so I went and found the types. I was told I had "Tip Lesion FSGS" and all that came into my picture was the tip of the kidney was scarred. So ...

FSGS Sucks!!!

Mrs_M
  • By Mrs_M · June 30, 2008
  • 11 replies
  • FSGS sucks! That's just a simple fact! My husband found out he had FSGS in Sept of 2006. We started seeing a neph in July and it was August 30th he had a biopsy. With no family history (that we know of ...

Poison Oak

kstreza
  • By kstreza · June 29, 2008
  • 1 reply
  • As if the side effects of a long Prednisone taper weren't enough, I had a frightening rash show up on my right wrist on Monday after class. Like anybody that's been on Prednisone, I automatically checked ...

New Video & Newsletter

mwl_NCF
  • By mwl_NCF · June 29, 2008
  • 0 replies
  • Good Morning, I have just updated my profile and included a short video about NephCure and information on Nephrotic Syndrome and FSGS. The video can be accessed here: http://www.inspire.com/mwl_NCF/inspirati ...

Anyone have all 3?

mamagemini
  • By mamagemini · June 28, 2008
  • 10 replies
  • I have all 3 - FSGS, NS and MCD. With the wonderful HIGH cholesterol that never goes down and high bp. Oh and the never ending edema...anyone ...

New feature: video!

Brian
  • By Brian · June 28, 2008
  • 10 replies
  • I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...

cytoxin

D-Marie
  • By D-Marie · June 28, 2008
  • 8 replies
  • Hi. My son has had nephrotic since age 2 and is now 12. Has been relapsing more frequently so our Doc is thinking of trying Cytoxin. We are worried about the side effects of hair loss, sterility..etc ...

DR.APPT

wedad
  • By wedad · June 26, 2008
  • 7 replies
  • YESTERDAY WAS MY DR'S APPT.WITH THE HENRY FORD TRANSPLANT TEAM.AFTER MEETING WITH ALL THE TEAM MEMBERS,I GOT THE GOOD NEWS LAST,MY KIDNEYS ARE WORKING 24%,THE DOC SAID I SHOULD WAIT TO START DOING ANYTHING,BECAUSE ...

On My Own...apparently

fsgsblahs
  • By fsgsblahs · June 23, 2008
  • 10 replies
  • Well, what a rollercoaster ride for the past 12 months!! Sheesh!! I was diagnosed with FSGS a year ago....after working in an auto manufacturing plant for nearly 8 years and 3 shoulder surgeries later ...

Support your group and raise awareness with badges

Walter
  • By Walter · June 20, 2008
  • 30 replies
  • Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

Still no diagnosis

Shawnsmom
  • By Shawnsmom · June 16, 2008
  • 0 replies
  • Well our jouney started in February of this year and we are still trying to pin-point my son's nephrotic syndrome. We ran some genetic testing on his LAMB2 gene which came back negative, so he does not ...

New feature - profile completeness gauge

Tasha
  • By Tasha · June 12, 2008
  • 4 replies
  • Greetings from TeamInspire! I'm your friendly neighborhood designer, here to tell you about some new features. You might notice that today we revamped your member homepage - https://www.inspire.com/member-home.pl ...

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.