POLL: Causes of kidney failure / disease - Please see if yours is shown here.

[lola]

Otto has Alports, Dani our youngest daughter who is 7 also has it......

[joelietz]

Wow, that's a scary case! How shocking that no doctor has provided you with an explaination! I didn't realize that kidney failure could happen that quickly!

 
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Do you need a medicare supplement?

Hmm its seems like i am in the 'majority' here ! I wonder if they just lump us all together because they cant give us any explanation or reason as to why its happened ? Focal Glomerulosclerosis is looking mighty popular ! I wonder should we take this poll a step futher and ask what reasons they gave you when this was diagnosed ? I myself have never been given a reason for kidney failure .. one day fit and healthy , get up next morning .. i got kidney failure !! yup that fast .. no outward signs or illness , all overnight it happened !!

[SkyDancer]

Mom's kidney failure was caused by a heart condition and the medication "Bextra".( Glad they took that sh*t off the market.) It was prescribed for RA.There's another woman in the clinic that had the same thing happen to her because of "Bextra".

[clappedout]

Undiagnosed Hypertension for years...only found out I was at stage 3 CKD after a mild heart attack caused by the hypertension

[wolfken]

type 1 diabetes, it went really fast, first diagnost with 20% usage the down to 5% in two months,  peritoneal for the past 13 months....Wolfken

[AIRon]

I voted hypertension but I think it complicated it. Come to think of it they didn't ever tell me why my kidneys failed, thats probably a question I need to ask...or maybe they did tell me and I wasn't listening as usual. Just ask my wife, I hear really good but I do not listen.

[Sax-O-Trix]

Branchio-Oto-Renal Syndrome   

[-Lady Noir-]

I voted hypertension but I think it complicated it. Come to think of it they didn't ever tell me why my kidneys failed, thats probably a question I need to ask...or maybe they did tell me and I wasn't listening as usual. Just ask my wife, I hear really good but I do not listen.

Haha.. i get that. Mike was told his was because of having a severe case of Strep Throat when he was very young. Although, he remained undiagnosed till he was 20. I should probably ask too, as he is rather forgetful as to what they said. Story of his life 

[mel75]

I was diagnosed w immune complex glumerulonephritis, I don't even know what it means, I also have HTN and they don't know if I and that because of the kidney failure or kidney failure because of HTN.

[Fox_nc]

Reflux here. I had constant UTIs as an infant.  Docs told my mother that she just wasn't changing my diaper enough (so I ran around naked for a while) When I was 5 I became very ill and was taken to the local ER of a small hospital.  They didn't know what was wrong and thought I was going to die so they rushed me to Children's Medical Center in Dallas where someone had the bright idea to check my blood pressure - wow! After some testing they found the reflux and did corrective surgery.  Mom was told everything would be ok and for me to just live my life - wrong answer!

I was really kinda suprised to see the number of reflux patients ... I'm told because of older cases like ours it is caught and corrected at much younger ages and doesn't lead to kidney failure now.  I had a friend recently whose daughter was diagnosed and had it corrected at 6 weeks old - I told her "Your Welcome" :-)

Now they say I have collasping FSGS ....

[Jie]

PKD.

This is an interesting poll. The % nationwide in the U.S. is 30%-40% from diabetes and 6-8% from PKD. Yet here PKD is number 1 (over 15%) and diabetes are just about 10.9%. If the patients from the other countries do not screw up the results, then PKD patients are much more active than diabetes. I assume everyone here is an active patient.

[gothiclovemonkey]

I was diagnosed with FSGS in 04, after complications having my son, i had a biopsy done, they said i have fsgs, sent my stuff off to somewhere to find out why, and they didn't give me much info about anything. I pretty much was told id have about 10 years before its even a concern, so i didn't really concern myself, until just about a year later i started feeling like crap. Then in 07, i was working and going to college, and i get a letter about my test results, saying cretin was high and i need a fistula soon. I was not told what a fistula was beforehand, so i looked it up on line, immediately began to bawl. After having the fistula things went really fast, i went from fine to really sick, and i still have about as much answers as i did then. I didn't know about dialysis really either... No one offered the PD to me, which is what i do now, which is soooo much better than the hemo! I was miserable on hemo, skipped alot, nearly killed myself. Things are alot better on pd, but i still don't know why i have fsgs.... I don't think anyone in my family has it, I'm not African American, and i don't use herion, and never had the illnesses that cause it, which are the only reasons they could give me for it.

[RichardMEL]

gee glm that's absolutely horrible to be treated like that - just told this and that and NOT given information to help you understand things. That's a disgrace in my view. I was always given lots of information, invited to seminars by the renal unit to understand the dialysis modes, transplant options and so on.

As for FSGS I have that too, but they could not tell me what caused it, but figure it was perhaps a UTI when I was a infant that was not caught. Seems like total guesswork to me. Maybe there just isn't a reason and it's one of those things(sadly!) - sounds like you're in a similar boat.

[gothiclovemonkey]

I have very little trust in drs, and ive had one heck of a medical journey all my life. I feel i could be a dr with my knowledge lol
My doctor also told me i do not qualify for a transplant because i am too fat. He said, and i kid u not, If u want to have a transplant u will have to starve yourself. Now that ive lost 60 some odd lbs, im not even sure that i want one, it seems risky, and possible that the fsgs will effect the new kidney....
the only answer reguarding fsgs was after id been on dialysis about 2 years, my dr gained an assistant dr, and He told me that its possible i got fsgs because im too fat. "there ae new studies to suggest weight may be a big factor"
I love when doctors blame everthing on weight and smoking

[M3Riddler]

The reason I lost my kidneys were due to Cyctinosis.  Cystinosis is a lysosomal storage disease characterized by the abnormal accumulation of the amino acid cystine in the cells.

[okarol]

The reason I lost my kidneys were due to Cyctinosis.  Cystinosis is a lysosomal storage disease characterized by the abnormal accumulation of the amino acid cystine in the cells.

How rare is that? I have never heard of it before.

[MooseMom]

I don't know why I have fsgs, either.  The prevailing theory is that my pregancy in 1991 was the catalyst.  My son feels bad because he thinks he caused it.

[ulrika]

Reflux....My daughter was diagnosed with reflux when she was six, after numerous hospital visits with high fevers and urinary infections. We were told that she had some scarring on her kidneys from all the infections, but that her kidneys would rejuvenate as she was so young. We know now that it was more serious than that. She lost two babies without anyone connecting the cause. It was not until she was going to have a ct scan, through a blood test that they require prior to the scan that she was finally diagnosed. It was by a pure fluke, as the scan was to investigate her migranes.

[LT514]

ANCA positive vasculitis. Not many around...most are already gone. I was lucky.

[gothiclovemonkey]

I don't know why I have fsgs, either.  The prevailing theory is that my pregancy in 1991 was the catalyst.  My son feels bad because he thinks he caused it.

Strange, because had i not had my son, i wouldnt know i had kidney failure.

[casper2636]

Mine was hypertension. When I was in my twenties, my blood pressure was very high due to experimental chemical exposure (thanks uncle DuPont). I didn't have medical insurance and could not afford the medication. Little did I know this would eventually kill my kidneys'. Thats why they call it "the silent killer". Boy, am  sorry now!

[needlephobic]

not sure what it is called mine was caused by a saggy bladder could not empty it all the way and the urin didn't have no place to go and backed up in my kidneys and my kidneys totally cloesed up  they had to go in and put stints in my kidneys to open them up for about 3 days I had a bag and a tube comming out of my back bu5t the stupid neph wanted to wait untill i was on my death bed before he put me on dialysis

[Genlando]

Hypertension got my kidneys. I thought the BP meds would make me too drowsy to be able to work, so I refused to take any.  Nobody told me that kidney failure would make you too ILL to work.  Hindsight's 20-20!

[Constantcrave40]

I started to GAIN weight when I turned 26. Around that time. And didnt feel well alot. And doc said I needed to have a biopsy of my kidneys. My levels were up and down. Well then after the test I was told I had/have scar tissue on my kidneys and could end up m dialysis in a couple yrs! I think I didnt totally understand and got scared,i pushed it asif and just dealt with the throwin up and weiit gain on my own. Then I ended up m life support for 4 days and 9 days cardiology unit, because a doc gave me to much morphine iv. Knowing I was on pain meds. Said id be ok. It raised my creatine to 10! I had my 1st and 2nd dialysis on a resperator. 3 months later I started dialysis for good. The main cause? It is reflux disease. When I was young up until this every time I would urinate,some urine would b2k up into my kidneys and kept scarring them. Come to find out if the docs did riit tests when I was young a simple surgery wouldve prevented the kidney failure! Lookin back I had ak the symptoms to. Frexuent uti's protien in my urine. And blood. And I wet the bed until age 14. And my doa said at my younger yrs I wet the bed cuz I was lazy. No! I didnt know when or why.id sl3p through it. Then my parents got mad at me. Then when I was 17-19 my doc found all the uti's and protien and sent me home m antibiotics.ak of these symptoms that warranted to check my kidneys! But they didnt and now ive been m dialysis 9 yrs.my advice to parents: if your child has any symptoms MAKE your doc check kidneys. Also I drank excessively ak through my teen yrs and on. I get tired of the treatments,but because I have developed bone disease and severe neuropathy in feet im in pain alot and exercise is limited. Cant get on list until I get my weight down now. I feel stuck!

[PVUgrad]

My husband's was brought on by Novantrone IVs, which he was doing for his Multiple Sclerosis. I didn't help either.