FSGS QUESTION

[treesx4]

 

[treesx4]

I have FSGS and have been studying on it. How do we get this disease?  I have no family members with kidney issues.
How did you find out you had FSGS, and does any of your family members have it too?
Seems like it will eventually attack the new kidney when I finally get one. Frustrating!

[gothiclovemonkey]

I have it, and we dont know why...
the reasons that they gave me at first dont fit me. Heroine use, its predominate in african american men.. there are new studies saying that its hereditary, but no one in my immediate family has it (although i did find out my great grandma, and my great aunt both died of kidney failure loooong ago, so it could have been fsgs, no one knows) And recently, I was told that being obese may also be a reason (if thats true, i do fit that catagory)

I have heard that it COULD possibly attack the new kidney, but its possible it might not.

[Deanne]

I have FSGS and for a long time I didn't know if it was genetic or just a fluke. Then a few years ago, my nephew was diagnosed with it, too. My family took part in a genetic study and it was determined that our version of it is genetic. No one else in my family is affected that I know of and I was diagnosed about 30 years before my nephew.

[mamagemini]

I have had this damn disease since 2005. They have NO idea how I got it. All we can come up with is overuse of Ibuprofen. This went on for over 15 years. I would take it every period (which was about every 3 weeks) at a rate of 400 - 600 mgs every 4 hours for 8 days. Then they would give it to me for a painful back and neck....it was always prescribed for anything.
The day I got really sick and knew something was wrong I had just taken my dose the night before. My feet were swollen when I woke up, I sat on the edge of the bed looking at them when I had to throw up....projectile vomiting for the whole day. It was a week later they told me I had Nephrotic syndrome. They had me get a biopsy which told them of my FSGS. I then had high cholesterol and high BP along with that fricking edema. 

[MooseMom]

I started spilling protein when I was in the later stages of pregnancy.  I was told to quit work immediately and go home to bed.  The next day, the health visitor came to see me, and she told me she had never seen anyone with so much protein in their urine.  I was told to go to casualty immediately.  Once there, I was diagnosed with pre-eclampsia and was told I wouldn't be leaving hospital until the baby was born.  I was there 6 weeks.  Afterward, I was still spilling protein, so we suspected an underlying kidney condition.  Six months later, I had a biopsy and fsgs was diagnosed.  That was back in 1992.  I was living in the UK at the time.

Once I returned to the US in 2003, I had a medical for insurance purposes, and that's when we found that my gfr was only in the 20s.  I managed to avoid dialysis and had a tx in June of this year, but by that time, my egfr was >14 and my creatinine was 4.

I was told that while it is possible that fsgs would attack my new kidney, the fact that it took over 20 years for me to reach CKD stage 5 bodes well. 

I've never been really unwell with fsgs.  Even with an egfr so low, I didn't feel bad.  I have no idea how I got this disease.  Hell, no one knows what causes it, so how can I know how I got it?  One of those mysteries of life, I guess.

[gothiclovemonkey]

I started spilling protein when I was in the later stages of pregnancy.  I was told to quit work immediately and go home to bed.  The next day, the health visitor came to see me, and she told me she had never seen anyone with so much protein in their urine.  I was told to go to casualty immediately.  Once there, I was diagnosed with pre-eclampsia and was told I wouldn't be leaving hospital until the baby was born.  I was there 6 weeks.  Afterward, I was still spilling protein, so we suspected an underlying kidney condition.  Six months later, I had a biopsy and fsgs was diagnosed.  That was back in 1992.  I was living in the UK at the time.

Once I returned to the US in 2003, I had a medical for insurance purposes, and that's when we found that my gfr was only in the 20s.  I managed to avoid dialysis and had a tx in June of this year, but by that time, my egfr was >14 and my creatinine was 4.

I was told that while it is possible that fsgs would attack my new kidney, the fact that it took over 20 years for me to reach CKD stage 5 bodes well. 

I've never been really unwell with fsgs.  Even with an egfr so low, I didn't feel bad.  I have no idea how I got this disease.  Hell, no one knows what causes it, so how can I know how I got it?  One of those mysteries of life, I guess.

I was pregnant and they said i had preeclampsia as well, had the biopsy a few months later, to reveal the fsgs...
The dr said that it would likely be 10 years before id have any problems, or need dialysis, but it was only 3 years later that i started.

I like to think of my son as a life saver, if I hadnt had him, I would probably not have known anything was wrong...

[Bill Peckham]

The way I think about it in my own case - I am the only one with it in my family - is that some environmental factor, meaning everything from something I ate, to some aspect of my lifestyle or past medical care, exploited a vulnerability that was cooked into my genes. As if I was born with a biological run of CKD dominoes with gaps, and one by one details of my life filled in those gaps, then something got those dominoes going and it finished with severe kidney disease.

When the kidney disease recurred in my transplant in 1990 they called it "nil disease" (hmm nothing disease, it doesn't feel like nothing) then it was FSGN now FSGS. I think FSGS is kinda a kidney disease catchall, I think there are a few different process that are lumped in to the FSGS category.

[RichardMEL]

I think FSGS from what I understand an have heard is one of those things that often you don't know what the cause is. Mine is one of those - I was diagnosed via protein in the urine at the age of 22, but the suggested "cause" goes back to me being a toddler and "possibly" haveing an untreated UTI (I had lots of ops on my eyes at the time) but really they're just grasping at straws.

it seems to be one of those unknowns