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Author Topic: I'm new and glad to be here.  (Read 1100 times)
raramorgan
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« on: April 02, 2016, 07:05:53 PM »

Hi

I am new.
I have a very rare kidney disease known as Fibrillary Glomerulonephritis or FGN. I am not on dialysis as of yet.  I will be sooner or later, there is no cure nor is transplant  an option because it is an auto-immune disease. I am in stage 3b with my GFR at 40. It really sucks. because there is not really any thing they can do for it. The studies show 2 to 4 yrs before dialysis. I was diagnosed in Dec. 2013.  I started out at stage 2 with GFR at 66. In the last 6 months my GFR has gone from 58 to 40. So I know it will cont to go down from there. I am 55 yrs old.  No other health problems.  Thanks for listening.
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SutureSelf
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Hey there!

« Reply #1 on: April 02, 2016, 09:37:15 PM »


...there is no cure nor is transplant  an option because it is an auto-immune disease.


Hey Raramorgan - welcome to IHD.  I hope you'll be able to glean info that will help as well as finding IHD a safe place to vent.

And as far as helping...a very good friend of mine lost her kidney function at age 18 due to FSGS (focal segmental glomerulosclerosis) an auto-immune disease like FGN.  She received a second cadaver transplant in December 2014 (fsgs took over the first almost from day 1 post transplant and she was able to get about 5 years out of it before having to go back on dialysis).  To help keep this one from being overtaken by FSGS, her transplant nephrologist included plasmapheresis (PP) as part of the post transplant medical regimen.  She started out numerous times per week and was tapered down according to the transplant center's protocols. 

The rationale for utilizing PP for recipients with FSGS (hope I have this right): blood serum from patients with FSGS has shown increased glomerular permeability to albumin. This permeability factor has been partially identified as a protein. The removal of this protein by plasmapheresis decreases proteinuria, thus saving the transplant from going into rejection.  It's now almost a year and a half post transplant and I believe she's down to one PP treatment every 3 weeks and doing well.  Maybe this could be an option for you? 

In the meantime I hope you can remain off dialysis for as long as possible.   Have you received info on diet modification and vitamin/mineral supplementation?  Here are a few links to good info:

https://www.davita.com/kidney-disease/diet-and-nutrition/lifestyle/stage-4-kidney-disease-diet:-focusing-on-nutrition/e/7938

https://www.kidney.org/atoz/content/vitamineral

https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/the-abcs-of-vitamins-for-kidney-patients/e/5311

http://www.kidney.org/sites/default/files/docs/nutrikidfail_stage1-4.pdf

Also, be sure to peruse these forums.  There is a lot of good info to be found. 

Wishing you only the best in this new journey. - SutureSelf
« Last Edit: April 02, 2016, 09:48:00 PM by SutureSelf » Logged

I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: April 03, 2016, 02:59:00 AM »

Welcome to the site raramorgan

    :welcomesign;

Sutureself gives some good advice, especially on the diet which could increase your non-D years.

Good luck and take care, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
SooMK
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« Reply #3 on: April 03, 2016, 05:39:47 AM »

Welcome!
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
Charlie B53
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« Reply #4 on: April 03, 2016, 08:55:08 AM »


Welcome to IHD.   You will find the Members here have a wealth of information at their fingertips that could put most libraries to shame.  Even using Google, one can be hard pressed to find the information that others had already searched long and hard for, saved or bookmarked so to have available when anyone has a need for it.

We are always glad to have a new Member to our group. Browse often, post freely, ask questions, make suggestions, all are welcomed.

Take Care,

Charlie B53
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Michael Murphy
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« Reply #5 on: April 03, 2016, 09:48:28 AM »

Welcome to the D list group.  I am 10 years older been on Dialysis 3 years now, and it seems like I have just started.  I too am not transplant eligible du to recurring melanomas. Dialysis is a royal pain in the butt but I feel it's a livable solution to my kidney problems.  All told I am at the center for 18 hours a week leaving 150 hours to have a life.  Don't spend your time obsessing about you number that's what you pay the nephrologist to do.  Coming to this site is a wonderful way to learn about this treatment and what's its like. Just rember no one complained about good treatments,  personally on the list of things I would rather not do dialysis is better than a trip to the dentist, having a colonoscopy, getting audited by the irs, the list of things worst is almost endless.  In other words the worst part of starting dialysis is the fea of starting dialysis.  Avoid it as long as you can and if the day comes you have to start go it's amazing how much better you will feel. Good luck, enjoy your pre dialysis time.
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Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #6 on: April 03, 2016, 11:00:33 AM »

Welcome to the site. I am a new member as well, having just posted my introductory post  :thumbup;
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My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
hatedialysis2
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« Reply #7 on: April 03, 2016, 11:31:58 AM »

Welcome raramorgan!   
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PrimeTimer
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« Reply #8 on: April 03, 2016, 11:07:19 PM »

Welcome to the site, raramorgan! Sorry about your diagnosis. You're in good company here! Want a boost? There are people on here who have posted that they do not let dialysis define their life and who they are and according to their other posts and even some of the pictures they've shared, they certainly don't. They keep on LIVING life! Well, these people give me a boost, hope it does the same for you. 
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Vt Big Rig
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« Reply #9 on: April 04, 2016, 07:49:33 AM »

Welcome to the site :welcomesign;
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
raramorgan
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« Reply #10 on: April 04, 2016, 07:59:53 PM »

 FGN is a little different because the glomeruli stick to each other from a protein that the body produces.  There is nothing really proven to help or slow it down. I do a low Potassium and low Phosphorous  diet as well as low sodium and low protein. I feel like there is not much I can eat but fresh fruit and fresh veggies which gets old but I have stuck to it fairly well. I am usually an upbeat kind of person I don't let this get me down the only time I get really pissed is when I get so tired from doing something I used to do all the time. I will not  let this disease or dialysis get me down I still want to work and do things outside of dialysis I am a nurse and I am doing all the research I can and  check back to make sure a miracle has not been discovered. LOL  I guess the good thing about the diet is I have lost over 30 lbs since Jan. But a lot of that is from having nausea most days. Does anyone on here have FGN too. If so I would love to hear form you. 
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kristina
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« Reply #11 on: May 20, 2016, 12:36:23 PM »

Hi

I am new.
I have a very rare kidney disease known as Fibrillary Glomerulonephritis or FGN. I am not on dialysis as of yet.  I will be sooner or later, there is no cure nor is transplant  an option because it is an auto-immune disease.

Hello and welcome to IHD.
It is strange that you were told that transplant is no option because you suffer from an auto-immune disease.
I also suffer from auto-immune-diseases (Lupus/SLE/MCTD and some more auto-immune-connected diseases i.e. Sjoegren's etc.)
and also from Chronic Proliferative Glomerulonephritis and I have recently completed my work-up for the kidney-transplant-waiting-list and I am activated and waiting ...
Please find out about the chances to have a transplant and I send you my best good-luck-wishes form Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Michael Murphy
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« Reply #12 on: May 20, 2016, 07:15:51 PM »

There is a lot of great work being done on new treatments for ESRD.  Some are actually in the beginning stages of human testing. Recently the first test of the Implantable Artifical Kidney were successful, from cloning to wearable kidneys to a machine small enough to be implanted the future looks bright for us dialysis inmates.
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Simon Dog
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« Reply #13 on: May 21, 2016, 07:38:32 AM »

Be sure to explore all dialysis options, including PD (always a home treatment) and home hemo.   It can make dealing with dialysis tolerable.
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