Focal Segmental Glomerulosclerosis Patients


Focal Segmental Glomerulosclerosis Patients

A group for FSGS Patients.

Members: 21
Latest Activity: Apr 4

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Comment by Shandy on April 4, 2018 at 9:53

At 19% function.  FSGS is what my mom had, and after me donating a kidney to her, it was discovered I too have it.  I'm looking at a transplant, but also trying to decide whether to do hemo or Pd.  My mom has done Home Hemo and is sick alot.  Just looking for some people who do PD who can tell me the pros/cons etc.  

Comment by Rafia on May 19, 2017 at 17:12
Hi my son is 12 years old and suffering from FSGC .. from 4 months... is there any one in this age ?
Comment by Motherof2 on March 13, 2017 at 1:35

Hi Wendy  - I am currently  off and will remain off until I can get the process of starting  dialysis but hope it's short term (my daughter  recently had surgery  and was in rehab  for 2 months  and due to the stress I was off).

I will be starting the process  with a  email  to my doctor tomorrow, to let him know I have  chosen PD.  Hopefully  I will be a candidate.

Thanks  for all the  information  

Comment by Wendy on March 10, 2017 at 21:51
Hi Motherof2, No I'm not on the transplant list. All the research I've found gave poor odds for success. I've never had any surgeries so figure as long the PD is going well I'll wait.
I wish I could still work but unfortunately this disease has taken its toll on me. My strength and stamina are so low and I seem to have too many bad days. I'm glad to hear you are able to work. Hold onto that for as long as you can.
Comment by Motherof2 on March 10, 2017 at 19:56
Thanks Wendy - I would like to do PD overnight so I can continue working and taking care of my family.
Are you on the transplant list? I am going to be added to the paired exhange program as I have a living donor that is not a match to me.
I was thinking about Hemo but the set up time and training time is putting me off.
Hope things go well for you!
Comment by Wendy on March 8, 2017 at 13:42
Hi Motherof2, PD is easy if you use the cycler machine at night. Daytime twin bags gets old real fast when you're doing 5 exchanges a day. Depending on what your gfr is you may not need that many per day. My machine does 4 during the night. PD doesn't seem to have the nasty side effects that hemo does. Dizziness and such after treatments. The biggest problem I find with PD is the drain pain which wakes me up some nights causing broken sleeps. Of if myself or one of my cats lays on the tubing and kink it. This causes the machine to alarm. The alarm stops as soon as I unkink it though. All the staff at my hospital say PD is better if you can do it as it's much easier on your body. It just takes some getting used to always having liquid in your peritoneal cavity.
I wish you luck with your transplant. Please keep me posted on your progress.
Comment by Motherof2 on March 7, 2017 at 18:09

Hi Wendy I  was diagnosed with FSGS in 2003 and I am waiting for a transplant (I have a live donor but he is not a match so he is signing up for paired exchange program so we can try to see if there is match Canada wide).

In the meantime I have to start dialysis - I need to decide between PD and Hemo.  So I have started doing some reading and I still don't know which way to go.

Comment by Wendy on February 21, 2017 at 0:46
Hi everyone. I was diagnosed with FSGS in December of 2013. I started PD last September. All the research I find gave pretty crappy odds for a successful transplant. I am worried about receiving a transplant, having it fail and then having to switch to hemo if my peritoneal membrane gets damaged. The thought of hemodialysis terrifies me as I can't stand needles. What are your thoughts on this? I see some people have had transplants. Were they successful?
Comment by Motherof2 on September 30, 2015 at 9:32

Hi Lexi,

How is your daughter doing?  As per my post I was diagnosed in 2003 - I have just started to look for a donor my husband will be getting tested soon to see if he can donate.

Comment by Lexi on September 29, 2015 at 3:08
Hi, my daughter who's now almost 5 was diagnosed with FSGS at 14 months :( just looking to connect with others.

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