What caused your kidney disease?

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

Moderator: administrator

What caused your kidney disease?

Postby ScrapheapHuman » Sun Apr 20, 2014 7:36 pm

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.
An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means it’s going to launch you into something great. So just focus and keep aiming.

http://scrapheaphuman.blogspot.co.uk/
ScrapheapHuman
 
Posts: 109
Joined: Mon Apr 15, 2013 12:24 pm

Re: What caused your kidney disease?

Postby SKM23435 » Mon Apr 21, 2014 7:00 am

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
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
SKM23435
 
Posts: 280
Joined: Wed Oct 16, 2013 2:39 pm

Re: What caused your kidney disease?

Postby jbell » Mon Apr 21, 2014 10:11 am

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.
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
jbell
 
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: What caused your kidney disease?

Postby lizbee » Mon Apr 21, 2014 10:19 am

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
I am 61 years old


diagnosed 17 years ago with Membratts disease

Now receiving dialysis

I am Scottish and live in Glasgow.
lizbee
 
Posts: 246
Joined: Thu May 02, 2013 11:02 am
Location: Glasgow

Re: What caused your kidney disease?

Postby sporti » Mon Apr 21, 2014 4:06 pm

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
sporti
 
Posts: 352
Joined: Fri Aug 25, 2006 7:51 pm

Re: What caused your kidney disease?

Postby AmandaClare » Mon Apr 21, 2014 4:14 pm

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.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
AmandaClare
 
Posts: 648
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: What caused your kidney disease?

Postby Tibbs » Tue Apr 22, 2014 9:12 am

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.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Tibbs
 
Posts: 1082
Joined: Wed Nov 30, 2011 11:59 am

Re: What caused your kidney disease?

Postby bigbuzzard » Tue Apr 22, 2014 10:35 pm

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... :-)
User avatar
bigbuzzard
 
Posts: 1476
Joined: Sun Mar 12, 2006 11:21 am
Location: Devon, UK

Re: What caused your kidney disease?

Postby ScrapheapHuman » Wed Apr 23, 2014 5:48 am

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.
An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means it’s going to launch you into something great. So just focus and keep aiming.

http://scrapheaphuman.blogspot.co.uk/
ScrapheapHuman
 
Posts: 109
Joined: Mon Apr 15, 2013 12:24 pm

Re: What caused your kidney disease?

Postby rheaybou » Wed Apr 23, 2014 7:04 am

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.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
Posts: 1360
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: What caused your kidney disease?

Postby jstuartrobson » Wed Apr 23, 2014 10:40 am

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.
jstuartrobson
 
Posts: 36
Joined: Thu Apr 17, 2014 1:48 pm
Location: Spalding, Lincolnshire

Re: What caused your kidney disease?

Postby veggy » Thu May 15, 2014 2:35 pm

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 !
veggy
 
Posts: 6
Joined: Mon May 12, 2014 6:03 pm

Re: What caused your kidney disease?

Postby Adam » Fri May 16, 2014 10:06 pm

IgA nephropathy. Diagnosed by biopsy.
July 2008 - transplant - living related donor
April 2005 - dialysis - tunnelled neckline, then CAPD (15 months), then HD (left wrist AV fistula)
January 2004 - diagnosis - IgA Nephropathy
Adam
 
Posts: 68
Joined: Wed Jul 27, 2005 11:31 am
Location: Southern England

Re: What caused your kidney disease?

Postby Doolally » Sun Jun 08, 2014 1:00 pm

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.
Membranoproliferative Glomerulonephritis (MCGN/MPGN) TYPE 1
Stage 5, nephrotic, hypoalbuminia, proteinurea, hypothyroidism, anemia, vitamin d deficiency
Ramipril, Levothyroxine, Ferrous Gluconate, Alfacalcidol, D3, Domperidone, Amitriptyline
Doolally
 
Posts: 379
Joined: Fri Oct 01, 2004 5:20 pm
Location: UK

Re: What caused your kidney disease?

Postby lizbee » Mon Jun 09, 2014 8:43 am

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
I am 61 years old


diagnosed 17 years ago with Membratts disease

Now receiving dialysis

I am Scottish and live in Glasgow.
lizbee
 
Posts: 246
Joined: Thu May 02, 2013 11:02 am
Location: Glasgow

Next

Return to The KPG Forum

Who is online

Users browsing this forum: Leilei, Majestic-12 [Bot] and 23 guests