General nosiness - your diagnosis to treatment time frame?

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ktrew
Posts: 9
Joined: Mon May 09, 2011 4:48 pm
Location: Bath

General nosiness - your diagnosis to treatment time frame?

Post by ktrew »

Hi all

Just wondering what is the longest anyone has gone between diagnosis of kidney malfunction and dialysis or tx?

Since I seem to be on my way to either (hopefully living donation). I was diagnosed in 1994 but am still without dialysis or transplant. It'll be 17 years in November - WOOHOO! - but my function has been down around 20% these last 2-3 years. I was vainly clinging to the hope that I would last another 20 years so I can have an implantable artificial kidney. Lol. One can dream... :D

Thanks in advance for your replies!
Kate
"Doctors are sadists who like to play God and watch lesser people scream"
Thumps
Posts: 1302
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: General nosiness - your diagnosis to treatment time fram

Post by Thumps »

Interesting question! Hmm, let's see, I was diagnosed at 19, had a pre-emptive tx when my eGFR dropped to 9 when I was 33, so 14 years :)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Re: General nosiness - your diagnosis to treatment time fram

Post by Rik »

a fraction over forty years from some form of diagnosis to actual dialysis ...
sanela
Posts: 422
Joined: Wed Jul 16, 2008 10:22 pm
Location: London

Re: General nosiness - your diagnosis to treatment time fram

Post by sanela »

Diagnosed in 1989 I think, dialysis followed by transplant in 2009 so 20 years


Sanela
Walter, 15 september 2009
jenjen
Posts: 1535
Joined: Thu Jul 28, 2005 12:28 pm
Location: Leicester

Re: General nosiness - your diagnosis to treatment time fram

Post by jenjen »

About 3 weeks! I was anaemic, so the doctors did some blood tests to find out 'why': Two days later I was told I had 10% kidney function (absolutely no prior knowledge of this), a week later I had my peritoneal catheter and a week after that I did my first dialysis. Was pretty horrible
Stoday
Posts: 37
Joined: Sat Aug 07, 2010 12:29 am
Location: East Anglia

Re: General nosiness - your diagnosis to treatment time fram

Post by Stoday »

You're usually lucky to find out early, before you get symptoms.

Diagnosed in 2003, dialysis from 2010, so 7 years.
missyh
Posts: 110
Joined: Thu Oct 18, 2007 7:35 pm
Location: Chippenham,Wiltshire

Re: General nosiness - your diagnosis to treatment time fram

Post by missyh »

Hello,
Diagnosed with HUS in 1975 and was transplanted in 2007 as a live pre-emptive donation, therefore no dialysis, which is 32 years.
Had many "blips" in this time, but always managed to pull through
Hope this helps
Take care
Helen
ktrew
Posts: 9
Joined: Mon May 09, 2011 4:48 pm
Location: Bath

Re: General nosiness - your diagnosis to treatment time fram

Post by ktrew »

Thanks guys! I suppose watching your kidney function decline is not exactly fun (I've seen it myself and not liked it)....

Although that must've sucked jenjen! I was 11 when I was admitted to hospital with only 13% function but it went back up! Got up to about 50% in 7 years and then started dropping again. Not sure if this usual or unusual but I'm not complaining at the extra time I got.

Anyway, It's good to hear that some have managed to hold out for so long!

:D :D :D
"Doctors are sadists who like to play God and watch lesser people scream"
Rachel in NY
Posts: 650
Joined: Fri Apr 23, 2004 1:11 pm
Location: NY, USA,

Re: General nosiness - your diagnosis to treatment time fram

Post by Rachel in NY »

a few months.. I had multiple severe kidney infections and then was diagnosed with physical 'plumbing' abnormalities as well as reduced kidney function but a very short time later a bad infection/stone/etc took care of finishing it all up and was put on emergency dialysis and that was that. So the whole thing was a few months. It depends on the actual medical condition/diagnosis. Some conditions can stay 'neutral' for many years (say, pkd) and then flare up years later requiring treatment. Others are acute and poof, there is no time to even think, like by me.
Image Image

"When life keeps giving you lemons, get to work and make a tall frosted pitcher of icy cold lemonade."
Doolally
Posts: 379
Joined: Fri Oct 01, 2004 5:20 pm
Location: UK

Re: General nosiness - your diagnosis to treatment time fram

Post by Doolally »

First symptoms were in 2000 including protein in urine. MCGN diagnosed after biopsy in 2001. 2011 and I still have my own kidneys which are functioning surprisingly well. So 11 years for me so far.

Repeated steroid treatment has probably helped that, along with immunos, BP meds etc. I need to take steroids again, have needed them for a year now because of such huge protein leak. Can't take them cos I can't cope with them now I have a child and I'm having a lot of trouble getting doctors to help sort out other issues and social services to provide support so that I'm in a position to cope. So I'm kinda wondering if this delay is going to bring forward dialysis. But my lovely kidneys are still hanging in there and doing well. I must have determined kidneys considering the fierce attack from my immune system!

It's interesting to see many others have had kidney disease for many years before dialysis/transplant. I didn't know so many of you did, I thought my 11 years was quite unusual. When I tell people I have kidney disease they immediately presume I'm on dialysis, or they ask me if a 'transplant would solve the problem' (ha ha ha!). It's a very misunderstood illness, especially given how many of you have continued with kidney disease for many years before needing dialysis or transplant. Holding onto our own kidneys is the best thing, yet so many people seem to think I should have a transplant now and then I'd be okay. My function's so good but it's too hard to explain that even with functioning kidneys you can still have loads of problems. Anyway, I've gone off on a tangent...

:) :)
Membranoproliferative Glomerulonephritis (MCGN/MPGN) TYPE 1
Stage 5, nephrotic, hypoalbuminia, proteinurea, hypothyroidism, anemia, vitamin d deficiency
Ramipril, Levothyroxine, Ferrous Gluconate, Alfacalcidol, D3, Domperidone, Amitriptyline
Liz_G
Posts: 2
Joined: Tue Jan 25, 2011 11:37 pm

Re: General nosiness - your diagnosis to treatment time fram

Post by Liz_G »

Jenjen, sounds just like me! I'd been feeling sickly for a few weeks and then started with ankle swelling and slight chest pains. Nipped down to the local hospital and after blood tests was told that kidney function was at 15%. Total shock! Spent the next two months in hospital where docs diagnosed me with SLE. Pumped full of steroids and given cyclophosphamide (which I had a bad reaction to) and a few weeks of haemodialysis and plasma exchanges through a neck line on alternate days. No improvement in function so had PD catheter fitted and started PD about ten days later. All this was only in September so I'm still getting my head around everything!
JaneB
Posts: 182
Joined: Fri Oct 28, 2005 1:01 pm

Re: General nosiness - your diagnosis to treatment time fram

Post by JaneB »

Diagnosed with kidney failure in 1981 (25% function) and started PD in 2005 (at around 8% function). Have been on HD since last August and home HD since this April. Jane :)
PD 4 years 8 months
Hemo August 2010
sporti
Posts: 355
Joined: Fri Aug 25, 2006 7:51 pm

Re: General nosiness - your diagnosis to treatment time fram

Post by sporti »

Hi
Diagnosed after pregnancy in 1982 - egfr hovers around 15%.
Debbie F
Posts: 50
Joined: Wed Feb 23, 2011 7:38 pm

Re: General nosiness - your diagnosis to treatment time fram

Post by Debbie F »

Unfortunately mine was 9 hours... crash landed into renal failure & dialysis from huge height 19yrs ago :(
JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: General nosiness - your diagnosis to treatment time fram

Post by JMan »

Mine is much like Debbies, many UTI's , and a GP that failed to diagnose, then rushed to Great Ormond Street at the age of 5, given 24 hours to live and onto emergency dialysis.
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