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What caused your kidney disease?

Posted: Sun Apr 20, 2014 7:36 pm
by ScrapheapHuman
I am not very clued up on this and not overly sure how it all works or the correct terminology so if I get it wrong, I apologise LOL!

I was diagnosed with... Reflux Nephropathy... I think that's what it's called - the tubes from my kidneys to my bladder were broken and didn't shut. I had an op when I was 5 - not sure what they did though, just remember the drainage bag being yanked out and screaming! :shock:

Anyway, since having my children I now have CKD stage 3b... Although consultant said at an appointment we were looking at PKD?? Which I believe is them slowly failing? Correct me if I am wrong at any point LOL!

Since joining this forum I have heard so many different terms and things such as IGA, Alports and other various things - I have no idea what any of these are. It would be interesting to find out what they all mean and to know what you all have/ Sorry if this is a personal question.

Re: What caused your kidney disease?

Posted: Mon Apr 21, 2014 7:00 am
by SKM23435
My CKD (chronic kidney disease) is "non specific familial nephropathy" - ie it runs in the family and it doesn't have a better recognisable name. We did think about doing a biopsy when my eGFR was 35 but decided it was unlightly to be helpful.

It was diagnosed over a period of time. I had a 50% chance of inheriting it. I developed high blood pressure in my 40's and watched my blood tests deteriorate over the following 7 years. I've had no symptoms until the last month when I now ache, am tired and have no stamina. I'm 53 on the transplant list and have an eGFR of around 10. Awaiting catheter insertion for apd.

Sue

Re: What caused your kidney disease?

Posted: Mon Apr 21, 2014 10:11 am
by jbell
My CKD came as a complication from my diabetes, nerve damage to kidneys has caused them to fail,, not even sure myself what the terminology is for it. Didnt have any symptoms until about 4 years ago when eGFR was in early 20's, now at 15 and feel pretty much the same as Sue described above.

Re: What caused your kidney disease?

Posted: Mon Apr 21, 2014 10:19 am
by lizbee
My CKD is Membratts which is the shorten version of the name I could not even begin to remember it it full. I am told that it is a very rare disease and so far in the 17 years that I have been dealing with this I have never come across anyone else with it.

I am now 60 CKD stage 5 in need of dialysis and just waiting for date to start this, my kidney function is 7% and still falling, I have had all the help they can give me without dialysis so its time to move on. My disease is mainly that my immune system attacked my kidneys causing them to start to fail, but it is only in the last 2 years that I have had problems cos of then and I am now very tired all the time, anemic, itchy, and downright miserable most days.............I do hope this helps you although I do not have any of the names tht you once said, if you want to know anything else pm me or ask in here on the forum............................

Liz

Re: What caused your kidney disease?

Posted: Mon Apr 21, 2014 4:06 pm
by sporti
I had two biopsies with two different conclusions! :roll: So I just picked the first one and say its glomulerinephritis. Have been slowly failing since first diagnosed in 1982 but I probably had it before then cos they told me I had protein in urine at 17 but nothing was ever done. I too just ache. Am supposed to be getting a fistula but resisting at moment

Re: What caused your kidney disease?

Posted: Mon Apr 21, 2014 4:14 pm
by AmandaClare
I have Alports syndrome. It's a genetic condition where you don't make a particular type of collagen. It often causes hearing loss and eye problems but the main issue is kidney failure.

It's a fairly rare condition (about 1/5000 people) and there are different types caused by different underlying mutations.

My kidneys failed at 14 but I was lucky enough to have a very successful transplant at 16, which is still working.

Re: What caused your kidney disease?

Posted: Tue Apr 22, 2014 9:12 am
by Tibbs
I have IgA Nephropathy.

It's caused when your body joins together a specific anti-body (Immunoglobulin A) into big long chains to fight infection. These are too big to go through your kidneys and so they get bunged up, swollen and then they turn into scar tissue.

They think 10% of people have it, but only a small percentage of those ever get to the stage where one needs dialysis or a transplant.

Re: What caused your kidney disease?

Posted: Tue Apr 22, 2014 10:35 pm
by bigbuzzard
Hi ScrapheapHuman

I have PKD. This is 'Polycystic Kidney Disease' - it means that the kidneys (and sometimes other organs, eg liver) are full of cysts, which as I understand it, gradually take over the kidneys preventing the 'tubules' - or is it the 'glomeruli' ? - from doing the filtering of the blood that would normally happen. In fact the cysts get so large that a polycystic kidney can grow to several kilos in size. PKD is a genetic condition - if one parent has the gene (actually there are two different genetic strains) then each child has a 50% chance of inheriting it, and if they do, another roughly 50% chance of developing CKD, and needing dialysis/transplant. PKD is, I gather, the most common life-threatening genetic condition so there are lots of us around. Are you sure that's what your consultant said you have? It sounds like your kidney issues started as a child. PKD patients don't usually show up until they're adults - as the cysts aren't usually visible on an ultrasound until late teens/early 20s. Actually that's 'ADPKD' = Autosomal Dominant; the AD is nothing to with 'Adult' which many GPs even wrongly call it. There's a different kind of PKD called ARPKD (R = recessive). This shows up in babies, and can be extremely serious, though it's much less common.

I could go on... :-)

Re: What caused your kidney disease?

Posted: Wed Apr 23, 2014 5:48 am
by ScrapheapHuman
bigbuzzard wrote:Hi ScrapheapHuman

I have PKD. This is 'Polycystic Kidney Disease' - it means that the kidneys (and sometimes other organs, eg liver) are full of cysts, which as I understand it, gradually take over the kidneys preventing the 'tubules' - or is it the 'glomeruli' ? - from doing the filtering of the blood that would normally happen. In fact the cysts get so large that a polycystic kidney can grow to several kilos in size. PKD is a genetic condition - if one parent has the gene (actually there are two different genetic strains) then each child has a 50% chance of inheriting it, and if they do, another roughly 50% chance of developing CKD, and needing dialysis/transplant. PKD is, I gather, the most common life-threatening genetic condition so there are lots of us around. Are you sure that's what your consultant said you have? It sounds like your kidney issues started as a child. PKD patients don't usually show up until they're adults - as the cysts aren't usually visible on an ultrasound until late teens/early 20s. Actually that's 'ADPKD' = Autosomal Dominant; the AD is nothing to with 'Adult' which many GPs even wrongly call it. There's a different kind of PKD called ARPKD (R = recessive). This shows up in babies, and can be extremely serious, though it's much less common.

I could go on... :-)
I didn't know PKD meant another thing as well. When I went in to the office, he said "You know we are looking at Progressive Kidney Disease now and you are more than likely going to have to need a transplant!" then he wrote on my notes and I saw PKD... So just assumed that's what it meant. He scribbled some more stuff, but by this time I was looking at my husband trying not to cry, so perhaps he wrote 'Progressive' as well... I will have to ask at my next appointment.

Re: What caused your kidney disease?

Posted: Wed Apr 23, 2014 7:04 am
by rheaybou
I will pair up with Amanda here and throw Alports into the hat again. As she said it is rare, my TX is a year old.

Re: What caused your kidney disease?

Posted: Wed Apr 23, 2014 10:40 am
by jstuartrobson
Tibbs wrote:I have IgA Nephropathy.

It's caused when your body joins together a specific anti-body (Immunoglobulin A) into big long chains to fight infection. These are too big to go through your kidneys and so they get bunged up, swollen and then they turn into scar tissue.

They think 10% of people have it, but only a small percentage of those ever get to the stage where one needs dialysis or a transplant.
I'm another person with IgA Nephropathy.

Up until Tibbs' post, It hasn't been all that clear what IgA Nephropathy meant either that, or I was told so long ago I can't remember. Thanks for the description Tibbs.

Re: What caused your kidney disease?

Posted: Thu May 15, 2014 2:35 pm
by veggy
My daughter is 16 and just diagnosed with ckd. She has scarring on both and one smaller . They asked me about her medical history and previous illness etc, so guessing its due to that. Im a bit clueless tbh, only just diagnosed !

Re: What caused your kidney disease?

Posted: Fri May 16, 2014 10:06 pm
by Adam
IgA nephropathy. Diagnosed by biopsy.

Re: What caused your kidney disease?

Posted: Sun Jun 08, 2014 1:00 pm
by Doolally
Membranoproliferative Glomerulonephritis also known as Mesangiocapillary Glomerulonephritis. Or MPGN or MCGN for short. It is another form of nephrotic disease where the immune system is attacking the kidneys. I have it very aggressively so not a great candidate for a transplant as the disease will still be in my immune system and will effect a transplanted organ. I really need an immune system transplant!! I'm in stage five now after 14 years with the disease. Soon I'm going to be on dialysis for the foreseeable future unless they find a treatment that works for me (other than living on high dose steroids which I will not do!). The docs say that it was caused by a virus or infection but I have no idea what. I tested positive for Epstein Barr at the time I first got ill so they think maybe it was that.

Re: What caused your kidney disease?

Posted: Mon Jun 09, 2014 8:43 am
by lizbee
Doolally wrote:Membranoproliferative Glomerulonephritis also known as Mesangiocapillary Glomerulonephritis. Or MPGN or MCGN for short. It is another form of nephrotic disease where the immune system is attacking the kidneys. I have it very aggressively so not a great candidate for a transplant as the disease will still be in my immune system and will effect a transplanted organ. I really need an immune system transplant!! I'm in stage five now after 14 years with the disease. Soon I'm going to be on dialysis for the foreseeable future unless they find a treatment that works for me (other than living on high dose steroids which I will not do!). The docs say that it was caused by a virus or infection but I have no idea what. I tested positive for Epstein Barr at the time I first got ill so they think maybe it was that.

Hi that sounds very much like my disease and I think now that I have read the real name that it is, like you I started having problems around 15 years of the disease with kidney function falling rapidly I have now just completed my first full week of dialysis and I am starting to feel a bit brighter about the future, I have never come across anyone with the same disease until I read your post, I do hope that you are as well as can be expected and that dialysis comes soon for you if you feel the need to chat or rant or simply just moan pm me anytime.................

Liz