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Thinking of refusing Treatment
- By L-L-B · New reply 9:55 am
- Discussion in Adults with FSGS · 33 replies
- 2 months ago my Neph weened me off Prograf. Because it was not working anyway. I have a appointment at the end of this month, He said he will try something else then. BUT I am feeling the best I have ...
Medicine Choices
- By Kokomo5 · New reply yesterday at 3:32 pm
- Discussion in Children with nephrotic syndrome · 1 reply
- I'm super excited that there is a discussion board for this! My 4 year old son was diagnosed in February of 2009 and I had NO idea what this was all about or how difficult the slightest cold or stomach ...
turn a frown upside down
- By CoachT · New reply yesterday at 10:03 am
- Journal · 8 replies
- Sometimes I get so frustrated with myself. Yes Ms "happy-go-lucky" has her moments of dispair. I have been preparing for so many things in my life... my businesses, my weight loss, my blogging, and my ...
Getting Better
- By squiddiddler · Posted yesterday at 9:36 am
- Journal · 0 replies
- Met with Neph yesterday. Protein leak down from 21 to 10. Reduced blood pressure pill and water pill. Gonna be taking Cytoxin for another 6 months it seems. Next appt is in October ...
Pulmonary Fibrosis & FSGS
- By sk1 · New reply July 29, 2010
- Discussion in Adults with FSGS · 1 reply
- I was just recently diagnosed with Pulmonary Fibrosis. I was scheduled for my kidney transplant 5/28 when i was told there were some unknown "nodules" on my right lung and that my transplant would have ...
PROTEIN TO CREATINE RATIO
- By BABYWITHFSGS · New reply July 29, 2010
- Discussion in Children with FSGS · 2 replies
- I brought my son's urine to the lab on Monday the total protein was 564 but the protein to creatine ration was 4.3 his pedi dr. says that he is not as bad as he was in may because his protein was 1620 ...
:(
- By beth-e · New reply July 29, 2010
- Journal · 6 replies
- i completely understand why people with chronic illness get depressed easy. it sucks, hardcore.... trying to run after my 7 yr old and be a mom.... all i want to do is cry and throw all my meds out, curl ...
Support Group For Dallas Texas
- By mylifenow · New reply July 29, 2010
- Discussion in Children with FSGS · 5 replies
- Actually this is for ANYONE affected by this disease. Hi Everyone! My name is Jen Cagle, I am a mother of a 6 year old boy Tanner who has FSGS. He was diagnosed at the age of 11 months. As you all know ...
anemia treatment for ckd
- By Ultem44 · New reply July 29, 2010
- Journal · 6 replies
- Just got a copy of recent labs (neph appt in a week). My HGB and HCT have been on a steady decline, currently 11.4 / 34.8 respectively. I'm not on any iron pills, as many of you seem to be.. I did ask ...
The Nephrotic Syndrome Study Network (NEPTUNE) Longitudinal Cohort
- By Foxkins · New reply July 29, 2010
- Discussion in Clinical trials Q&A · 1 reply
- Follows is a link to be part of a study. Please go to the site to read the requirements. http://rarediseasesnetwork.epi.usf.edu/N EPTUNE/studies/6801-all.htm ...
Gambling with my FSGS
- By Lindsey224 · New reply July 29, 2010
- Journal · 2 replies
- I'm a little anxious today. I've had one of the blessedly easier roads with FSGS and have been in remission for the better part of 10 years now (my only issues were during pregnancies). However, a few ...
help with swelling/edema
- By pamela06201 · New reply July 28, 2010
- Discussion in Adults with nephrotic syndrome · 4 replies
- Unfortunately, I had another relapse... my third since diagnosed in Nov. 2008. The doctors put me back on prednisone along with my usual dose of Prograf. I was wondering what do you guys do to help with ...
Vitamin D Information and Education
- By Foxkins · Posted July 28, 2010
- Discussion in Children with nephrotic syndrome · 0 replies
- http://www.vitamindcouncil.org/ GREAT SITE FOR REAL ANSWERS and understanding. There is much written on the internet regarding Vitamin D. Some of it is correct, some not. I think its important to go to ...
FSGS AND PREGNANCY
- By susie031602 · New reply July 28, 2010
- Discussion in Adults with FSGS · 12 replies
- I'VE HAD FSGS FOR 8 YRS NOW. AND I'LL BE PLANNING ON GETTING PREGNANT IN THE NEXT YEAR OR TWO. I WAS JUST WONDERING WHO HAS BEEN THROUGH IT. AND WHAT AFFECT IT HAS HAD ON YOU AND THE BABY, IF ANY? I WANT ...
Scared
- By nanabarb · New reply July 28, 2010
- Discussion in Adults with nephrotic syndrome · 10 replies
- I have been dealing with Idopathic Glomerulernephritis for some time now. A year ago I did the Cellcept therapy and got mininal results. I see the Nephrologist today but my last visit he explained that ...
Due to start IV methylprednisolone tomorrow
- By Mrkewl98 · New reply July 28, 2010
- Discussion in Adults with nephrotic syndrome · 6 replies
- Looking for any advice/experiences regarding 3 days of 1 gram (1000mg) IV methylprednisolone treatment. Im not really sure what to expect. I was told about 4 hours of sitting there being monitored. Once ...
Is there any new research going on?
- By pistolpete · New reply July 28, 2010
- Discussion in Children with nephrotic syndrome · 3 replies
- My daughter is 23 years old and has been chronically ill for 19 years. She was diagnosed with Minimul Change Syndrome at the age of 4. At the age of 8 was diagnosed with Nephrodic Syndrome then was diagnosed ...
How long did your Prednisone treatment take to work?
- By Mrkewl98 · New reply July 28, 2010
- Discussion in Adults with nephrotic syndrome · 6 replies
- Hi there. A week ago, I started my Prednisone treatment. First 3 days were IV 1 gram and now doing 60mg/day tablets 1x each day. The side-effects are more than I though they were going to be - a lot more ...
low platelet count
- By lriso · New reply July 27, 2010
- Discussion in Adults with nephrotic syndrome · 6 replies
- My platelet count dropped to very low levels. My doctor just mentioned that it could make clotting more difficult and told me to run the test again. I now bruise extremely easily and little cuts bleed ...
***You can still sign up for our E-Newsletter***
- By NephIntern · Posted July 27, 2010
- Discussion in NephCure advocacy · 0 replies
- There aren't many months left to receive the FREE summer NephCure NOW! E-Newsletter. Sign up now so you don't miss out on this astounding source of information about FSGS and Nephrotic Syndrome. Sign ...
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