new member - FSGS and dialysis suck but it aint all bad either

[lunadatura]

November 2006 I was diagnosised with FSGS - focal segmental glomeral sclerosis via kidney biopsy. I was reffered to the biopsy due to severe hypertension. My kidneys failed in May of 2009. I have to say I love having such a rare disease that some of the medical professionals I end up working with dont even know what it is and havent heard of it. Some say FSGS is an auto immune disorder others dont. Some say my hypertension caused the FSGS but that doesnt make sense to me. Others say that kidney disease causes hypertension - its makes more sense to me.

Anyways I hate dialysis too.

I dont hate that I got easily approved for SSI and disability and get to take some time off of work to take care of myself. 

[looneytunes]

Hi luna and welcome to IHD!  Glad you joined all of us out here that also HATE dialysis.   

[RichardMEL]

Welcome!

Hate to say it but FSGS isn't all that rare, and I don't know that it's an auto-imune thing.. it's scaring of the kidney filters... but yeah I am not sure anyone is really sure what causes it. Yep, I'm another lucky sod that has it too. Kidney Disease and hypertension tend to go hand in and, and it's a sort of catch-21 that one can cause the other.. though I was always told that hypertension tend to damage kidneys faster/more - hence when I was first diagnosed the very thing they did was put me on BP meds to stabalise that. Best. Decision. Ever.

Anyway welcome to IHD!!! Hope to see more from you soon!
 

RichardMEL, Moderator

[MooseMom]

Welcome to you!  I have fsgs, too.  I'd love to know what caused it.  I was hospitalized with pre-eclampsia during the latter part of my pregnancy in 1991; my blood pressure was high at that time (but not before that), and after delivery by C-Section, it went up really high.  But as time went on, it was OK, but I kept losing protein.  Six months later, I was biopsied and got the diagnosis.  I don't remember having high bp because I was not treated for that.  But my doc did keep close tabs, and when my bp started to go up, I went on meds. 

I personally believe that in my case, it IS an autoimmune problem that was triggered by my pregnancy.  When a woman is pregnant, her immune system has to accomodate a "foreign" mass, and I don't think mine accomodated much of anything.  That's my theory, and my neph hasn't come up with anything better and agrees that it's a damn good theory.

I have to often explain stuff to my other docs.  My gynecologist refuses to have me do a urinalysis during my annual checkup because my pee is too complicated.  And my dentist looks baffled.

[paris]

Welcome.  I am another with FSGS with no known cause.   I think it is one of the leading causes of kidney failure next to polycystic kidney disease.   You will find lots of great information here. It helps to talk to and learn from others who are in the same boat.  We look forward to reading more of your posts.  Welcome to IHD.



paris, Moderator

[monrein]

   to IHD.  I've been dealing with ESRD for a very long time now and I'm glad that you found this site although it's a club to which no one should belong.
I look forward to getting to know more about you here.

[galvo]

G'day lunadatura and