General nosiness - your diagnosis to treatment time frame?
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General nosiness - your diagnosis to treatment time frame?
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...
Thanks in advance for your replies!
Kate
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...
Thanks in advance for your replies!
Kate
"Doctors are sadists who like to play God and watch lesser people scream"
Re: General nosiness - your diagnosis to treatment time fram
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!
Re: General nosiness - your diagnosis to treatment time fram
a fraction over forty years from some form of diagnosis to actual dialysis ...
Re: General nosiness - your diagnosis to treatment time fram
Diagnosed in 1989 I think, dialysis followed by transplant in 2009 so 20 years
Sanela
Sanela
Walter, 15 september 2009
Re: General nosiness - your diagnosis to treatment time fram
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
Re: General nosiness - your diagnosis to treatment time fram
You're usually lucky to find out early, before you get symptoms.
Diagnosed in 2003, dialysis from 2010, so 7 years.
Diagnosed in 2003, dialysis from 2010, so 7 years.
Re: General nosiness - your diagnosis to treatment time fram
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
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
Re: General nosiness - your diagnosis to treatment time fram
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!
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!
"Doctors are sadists who like to play God and watch lesser people scream"
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Re: General nosiness - your diagnosis to treatment time fram
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.
"When life keeps giving you lemons, get to work and make a tall frosted pitcher of icy cold lemonade."
Re: General nosiness - your diagnosis to treatment time fram
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...
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
Stage 5, nephrotic, hypoalbuminia, proteinurea, hypothyroidism, anemia, vitamin d deficiency
Ramipril, Levothyroxine, Ferrous Gluconate, Alfacalcidol, D3, Domperidone, Amitriptyline
Re: General nosiness - your diagnosis to treatment time fram
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!
Re: General nosiness - your diagnosis to treatment time fram
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
Hemo August 2010
Re: General nosiness - your diagnosis to treatment time fram
Hi
Diagnosed after pregnancy in 1982 - egfr hovers around 15%.
Diagnosed after pregnancy in 1982 - egfr hovers around 15%.
Re: General nosiness - your diagnosis to treatment time fram
Unfortunately mine was 9 hours... crash landed into renal failure & dialysis from huge height 19yrs ago
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Re: General nosiness - your diagnosis to treatment time fram
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.