What caused your kidney disease?

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Re: What caused your kidney disease?

Postby HeatherC » Fri Jul 11, 2014 10:57 pm

I was born with small kidneys but because they were working fine at birth they signed me off. I was also premature and had stopped growing in the womb, so the belief is my kidney failure was caused by my kidneys not developing properly in the womb but they had been sufficient enough to work well at birth but as I grew older they couldn't cope so slowly deteriorated.
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Re: What caused your kidney disease?

Postby foam » Sun Jul 13, 2014 4:51 am

Well my kidneys have held up relitivly well despite having Kimuras disease, it's a rare disease that less than one in 10,000,000 people get. It causes many different kinds of kidney damage which seems different in every case, but all kinds like those mentioned above are within its powers. Good new is if you control the underlying disease, you control the kidney damage also. Many rare and inflammatory immune system diseases cause the same problems. In my case because it's an immune system disease, the very high amount of inflammatory cells wear out the kidneys tubes. So I'm on immune suppressors now, the very same drugs you use post transplant but I'm using them to avoid that situation.

Most people with Kimuras have a egfr around 40-50 on diagnosis and protein in urine but the egfr usually comes back to 80+ after steroids. Protein loss seems to recover in pretty much every case too. I'm on tacrolimus now which seems to have put my overactive immune response totally in the can. So everything is looking promising.
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Re: What caused your kidney disease?

Postby shep » Thu Aug 14, 2014 5:05 pm

After a year I still don`t know.I have one kidney,2 failed biopsies and noone can tell me why my kidney has failed except I have had 30years rheumatoid arthritis and it just might be,although very rare, amyloid build up.Is there anyone out there whohas had experience of this? Until "they" can give me more information I remain in denial that I need this dialysis!
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Re: What caused your kidney disease?

Postby foam » Thu Aug 14, 2014 9:08 pm

Shep, my doctor was worried I might develop amyloidosis because of immune system dysfunction, I was having polyclonal cells in one blood test. They have gone away now with the drugs thankfully.

But still there always has to be a background disease or lifestyle reason for it. If not a background disease or genetic error then staying up late, working night shifts, eating/drink toxins. Some kind of drug. Any of the above.. But something. I think its important to try and find out what especially if you are having a transplant for the sake of the new kidney not suffering the same fate.

I actually had a protein in urine test just before starting my drugs and it was all with range, quite unusual for someone with my disease who's had it so long so I've been very lucky.
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Re: What caused your kidney disease?

Postby laina55 » Sun Aug 17, 2014 10:15 am

Hi I had reflux as a child too, which left one kidney damaged. Like you I went on to have two babies which reduced my GFR on both occasions. But, I managed to carry on , with many visits to Renal Clinics , until I reached 50 before having to have dialysis. After 5 years or so I was lucky enough to have a donor kidney and 20 months later so far so good !. So don't panic ok x :D
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Re: What caused your kidney disease?

Postby aec79 » Tue Sep 16, 2014 10:52 am

Hi there,
my friend was diagnosed with MCGN. It also seems that an infection/virus caused his condition but no amount of tests have shown up the real cause. He's tried MMF and had a bit of an adverse reaction to it so it has been discontinued. Currently on prednisalone and waiting to see what the next course of action is. His GFR is currently 20 and seems to fluctuate quite a lot.. Is there a forum here specifically for MCGN...I'm trying to find others who have the condition as it seems its quite a rarity and so getting support and other peoples experiences seems to be quite difficult.
Many thanks :D
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Re: What caused your kidney disease?

Postby Alex 1984 » Sat Sep 20, 2014 9:10 pm

Hi there,
The doctors drew a blank with the cause of my kidney disease. They think either it was an infection or reflux that occurred years ago. One of my kidneys is very scarred and the other quite small. I found out because my blood pressure was high. When I found out my GFR was 14 and i was completely asymptomatic. In fact before I found out I was in great shape. Over the last 9 months my GFR has dropped to 9 and I get a bit tired and itchy. But I still find it hard to believe there's anything wrong with me sometimes.
Just had fistula surgery on my arm yesterday. Hoping to get a transplant before I need dialysis. My dad's been having tests for 5 months now to be a living donor.
Age 30
Knackered kidneys since dec '13 - unknown cause.
eGFR 9 - not on dialysis yet.
Waiting for transplant.
Fistula op sept'14.
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Re: What caused your kidney disease?

Postby gnarledcrayon » Wed Apr 27, 2016 8:29 am

foam wrote:Well my kidneys have held up relitivly well despite having Kimuras disease, it's a rare disease that less than one in 10,000,000 people get. It causes many different kinds of kidney damage which seems different in every case, but all kinds like those mentioned above are within its powers. Good new is if you control the underlying disease, you control the kidney damage also. Many rare and inflammatory immune system diseases cause the same problems. In my case because it's an immune system disease, the very high amount of inflammatory cells wear out the kidneys tubes. So I'm on immune suppressors now, the very same drugs you use post transplant but I'm using them to avoid that situation.

Most people with Kimuras have a egfr around 40-50 on diagnosis and protein in urine but the egfr usually comes back to 80+ after steroids. Protein loss seems to recover in pretty much every case too. I'm on tacrolimus now which seems to have put my overactive immune response totally in the can. So everything is looking promising.



Wow, what are the odds... I have KD too! :shock: :shock:

Back in '98, after having had skin lesions on my upper back for about 8 months, I was sent to a highly competent dermatological clinic, where they took 3 biopsies from the lesions. Luckily, I had my diagnosis in about two weeks - I have read of many cases where coming up with a diagnosis has been a very long process.

I went through a lot of tentative cures, but nothing helped. So, about 16 years ago, I opted for removal surgery. Although I knew that KD does flare up again, I have been apparently without symptoms for a little more than a decade.
Then some vascular tissue changes became evident again on my back, only this time they are deeper, nested inside the muscles.
Then in march of last year, I suddenly developed a nephrotic syndrome caused by MGN, membranous glomerulonephritis. Biopsies from my right kidney showed consistency with Kimura's disease, so my nephrologists consider my nephrotic syndrome as secondary to KD.

Thank goodness, apart from leaking proteins, my kidneys work just fine (until now, at least... :| knock on wood), but my MGN is proving to be resistant to prednisolone, cyclosporine and ciclophosphamide.

This makes me an extremely rare case. Consider that the incidence of KD is less than 1 in 1 Million, and that about 12-20% of KD patients develop nephrotic syndrome, and that about 30% of these have a form that is resistant to the usual medications. This means that I am part of a population that is likely to be way less than 500 on the whole planet.

I won't lie to you guys... I wish I spent these odds on a lottery ticket. :wink:
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Re: What caused your kidney disease?

Postby yeh » Wed Apr 27, 2016 12:47 pm

i diagnosed with lupus nephritis since i was 12 years old. currently i am 34.

now in CKD with creatinine 205. gfr around 20++

with 22 years of lupus nephritis, dunno when to start dialysis.

:( :( :(
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Re: What caused your kidney disease?

Postby gilders » Wed Apr 27, 2016 7:06 pm

Wegener's Granulomatosis (Vasculitis) caused my renal failure.
eGFR fluctuating between 14% and 18%
So close to dialysis now :(
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Re: What caused your kidney disease?

Postby lev » Thu Apr 28, 2016 4:06 pm

Hi. Im new here.. I came from the Philippines. sorry for intruding in this forum. I just need some support group. Im 27 years old and was diagnosed with Renal Disease 5years ago and I was 21 years old then. I have had uncontrollable hypertension and I believe that stress from work has been the major contributor aside from poor diet. Because I was so concerned with my health I visited the hospital and did some blood works. My ultrasound result shows I havr Bilateral Renal Parenchymal Disease, My doctor was not really clear about his explanation but what he said was its the same with CKD. (does ultrasound doesnt show ckd as their findings?) My creatinine serum was 1.9, i have leakage protein in my urine of 370. My doctor told me Im already at stage 4.. Im really confused right now. Can someone please enlighten me what stage of kidney disease I really am? It seems to me that the doctor has not been so cooperative and looking not so concerned at all, no sympathy or anything. I have also been experiencing kidney pain for 4weeks now but its a bearable pain, but enough to notice the pain, cant live quality life having this annoying pain. i dont know how to treat this. I have been eliminating salt, meat, fish, poultry on my diet. Been exercising regularly. But it seems that im feeling worse now. Im generally ill. Can someone please help and enlighten me. Thank you

I have always been hopeful that the Lord will help me get through this disease as long as i am helping myself as well.. And the same with everyone else in this forum
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Re: What caused your kidney disease?

Postby Johnylefox » Fri May 27, 2016 10:28 pm

IGAN was the cause.
It didn't waste anytime either.
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Re: What caused your kidney disease?

Postby Thelma » Sun Jun 12, 2016 10:58 pm

I have glomerulonephritis caused by vasculitis. My eGFR dropped to about 12% when I got my pre-dialysis transplant. I'll be "celebrating" my 4th anniversary next month.
Transplanted 31st July 2012 - Vasculitis survivor
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Re: What caused your kidney disease?

Postby Notso » Tue Jun 14, 2016 7:10 am

I wish I knew - or that my doctors knew although it probably doesn't matter much. Either Reflux Nephropathy or glomerulonephritis. My condition was discovered 24 years ago after a motor vehicle accident in which I was badly knocked about. They discovered one shrunken scarred kidney and one extra large but scarred kidney. Was told the damage occurred either in utero or very early in life. In any case I have slowly dropped down the eGFR scale to 25 but I'm still poking along OK.
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Re: What caused your kidney disease?

Postby Susiemay » Sat Jun 18, 2016 5:40 pm

Hello, I am new to this forum so please forgive me if I get something wrong. My CKD was caused by Vasculitis. I was diagnosed 2 years ago. I am now on PD.
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