first post - worried mum

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magmck
Posts: 3
Joined: Wed Jan 11, 2006 6:49 pm

first post - worried mum

Post by magmck »

My 10 yr old daughter was diagnosed with grade iv VUR and bilateral renal scarring at 3rs old. She was given long term antibiotic, which seemed to work for a while.
At 7yrs old she had a bilateral ureteric reimplantation.
Now at 10 yrs she is going into hospital soon to have her right kidney removed (Op date is 8th june) as her right kidney is only functioning at 11%. Her left kidney seems to be coping okay, although it is also scarred.
We recently moved from England to Scotland and both the hospitals she's attended are telling us different things.
The hospital down south says she has reflux nephritis, and the one here in the north says reflux nephropathy. - are they the same thing?
Down south also says she probably won't need dialysis when she's older, the hospital here says she probably will.
Does anyone know much about this condition.
Is this CRF?
Can her one kidney cope long term even though it is scarred?
Margaret
deborahjkl
Posts: 10
Joined: Sun Nov 05, 2006 7:53 pm
Location: Nottingham UK

Post by deborahjkl »

Dear Margaret,
I'm sorry to hear about your daughters problems. You must be really going through it at the moment. I'm sorry I can't be an awful lot of help but I can certainly sympathise. My daughter is three years old and has recently been diagnosed with bilateral VUR grade IV and bilateral renal scarring. We're really unsure what the future holds for her and at times it feels as if the consultant makes it up as he goes along. She is on long term antibiotics, apparently until she's five and then they'll reassess the situation. I am very intereseted in your daughters story and would love to hear more if you were happy to swap emails.
As far as I have worked out, reflux nephropathy refers to kidney damage caused by reflux. I found this definition of reflux nephritis on a web site 'Nephritis is an older term used to clinically denote a child with hypertension, decreased renal function, hematuria, and edema.' From that I'm guessing she could have both. Maybe someone with greater knpowledge will leave a message and advise you better.
As to whether your daughter will need dialysis, I guess they may not know that for sure yet. From what I've learnt, there is know telling how much the kidney function will deteriorate and whether dialysis/ transplant will be required.
As I said, I'm fairly new to all this and just trying to work it all out myself but it seems like we're staring form a similar point.
You'll be in my thoughts,
Deborah
lashy
Posts: 69
Joined: Fri Mar 09, 2007 11:45 am
Location: cumbria

Post by lashy »

sorry to hear about your daughters situation, i haven't got any answers for you but my thoughts are with you
take care
emma x
j-lo1972uk
Posts: 27
Joined: Tue May 08, 2007 12:35 am
Location: West Yorkshire, UK

Post by j-lo1972uk »

Hi Margaret, I'm sorry to hear about your daughter and that you're receiving unclear messages from her doctors. As far as I can ascertain, nephritis is an inflammation of the the kidney, caused in this case by reflux. Nephropathy means disease or abnormality of the kidney, so my guess is that the nephritis has caused the nephropathy. I suffered from this myself, which went undetected for 17 years (despite my mother's repeated presentations at the GP's with me as a small child with yet another UTI). This meant that by the time it had come to light, both my kidneys were far too badly damaged and i was in ESRF. However, I have been told that it is possible to survive with one kidney at 50% functionality (how much this is based in fact I'm unsure but it was my Renal Consultant who told me). I suppose in your daughters case it will be a case of wait and see, as the doctors will have to wait and see how things pan out with her remaining kidney and how well it functions. I know this probably isn't much technical help, but I'm sure that the doctors will continue to keep a close eye on her, and take any necessary steps to prevent any further damage to her remaining kidney. I hope her op goes well, and she has a speedy recovery. Take care. Jane.x
magmck
Posts: 3
Joined: Wed Jan 11, 2006 6:49 pm

first post - worried mum

Post by magmck »

When my daughter goes into hospital to have her kidney removed in a few weeks time, we have been told that she has to have a scan just before the op, to see the size of the poorly kidney.
They said that the operation can only go ahead if the kidney hasn't shrunk too much since her last scan (which was about 6 months ago and her kidney then measured 5cm).
Again I am confused, because surely if it has shrunk more then it means her condition is worsening and it would be best to remove the kidney.
Also if the operation did not go ahead, what would be the next step.
Sorry about all these questions, but this forum has been the most helpful source of information for me and my daughter.
Margaret
eliznew412
Posts: 440
Joined: Sat Aug 05, 2006 7:16 pm
Location: Bristol UK

Post by eliznew412 »

I'm not a medic but I think nephropathy. simply mean degenerated nephrons and of course they degenerate if they have been 'hammered' with infections from reflux of urine. I don't think many relux infections are caught in time to prevent scarring but of course the earlier its caught and treated the better.

I didn't know they could do a renal function test on each kidney separately - very impressive. You should be able to get the medics to give you the estimated % of normal function with both kidneys operating. It really depends on the extent of scarring on the better kidney has to how well it performs in the future ie in an adult body. If there is not much scarring this is excellent but its worth asking the medics specifically about this.
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bluemoon
Posts: 120
Joined: Thu Jul 15, 2004 5:36 pm
Location: North Yorks

Post by bluemoon »

Hello, my 12 yo has the same condition. Reflux has damaged his kidneys over the years. In his case one has been destroyed and is defunct but the other is OK.

They are not too concerned as a person can survive on one kidney (as per transplant) He was on long term antibiotics from about 7 to 11 and now goes back once a year for a scan and check ups and thats it.

His defunct kidney, I think, just sits there and the`ve never mentioned doing anything to it. I`m post transplant and my original kidneys happily sit there like the two useless lumps they are.

Anyway, hope it`s of use, good luck/
Jim
mich~
Posts: 28
Joined: Sat Jun 25, 2005 7:22 pm
Location: Bournemouth

Post by mich~ »

Hi,

My son also had reflux, and had his ureters reimplanted, he is now 5. His right kidney is no longer functioning they have said they would not remove it as it is not doing any harm. His left kidney is at 29% and has been for the past two years. As long as my son stays infection clear and takes his medication, he should remain stable until he reaches puberty. He see's the renal consultant every two months for check-ups, although he has traces of protien in his urine and his blood pressure goes up from time to time, he is doing well.. but WILL need dialysis/transplant around his teens.

I hope all goes ok with your daughter.

Best wishes

Michelle.
beekay1943
Posts: 4
Joined: Thu May 25, 2006 6:34 pm

SURVIVING ON ONE KIDNEY

Post by beekay1943 »

I had my right kidney removed through cancer in April 2006. My remaining left kidney was considerably underdeveloped and it was thought likely that I would have to go straight onto dialysis - I even had the dialising tubes from my neck created. In the event, however, my small kidney kept going on its own and, over the past year, the GFR has increased from 16% to 20%. I had a fistula fitted to my upper left arm in July last year (in readiness for any future dialysis) but, so far, there is no indication that this might be required in the forseeable future. I adhere to a strict diet which has certainly helped my small kidney to cope on its own.

I appreciate that every case is different but I encourage you to adopt a positive outlook as I'm sure this has helped greatly in my particualr case.
~G~
Posts: 280
Joined: Tue Mar 22, 2005 4:27 pm

Post by ~G~ »

Hi there,

FIrstly, I can understand your concerns and fears. It must be quite difficult finding out that your child is ill - and not knowing what the future holds.

That said, there are no real answers or true and false answers either. They kind of wait and see what happens, and go accordingly.

A person can survive forever with one kidney. So if they remove one, the remaining one will handle everything it needs to be. If it's scarred, it may not work 100% perfect, but 80% is good too. I guess that's why both dr.'s gave you different opinions as to her future with dialysis and not. It depends on how that 1 remaining kidney holds up.

Hopefully it'll stay strong and take care of her so no dialysis will be needed :)

A relative of mine was born with one kidney, which developed a stone in it when he was a teen, and it lasted him till he was in his 50's! This is without monitering and without treatment.

You are very lucky that you know about it.. and are treating it, before it gets too late. My sister was diagnosed with kidney failure just like that, at about 12 years old. She was getting uti's with increasing severity and again and again and again, but nobody really put 2 and 2 together. She had diabetes and they blamed it on that. By the time they realized she had a kinked ureter which caused reflux... her kidneys were gone. She wasn't born with it, and didn't have it as a baby, but it was something that developed as she grew, and at 12ish, it was discovered, too late.
And she went on immediate dialysis. They tried to 'fix' the damage, she had several botched ops, a kidney removed, etc, but that didn't prevent the inevitable. She has since had a transplant, and celebrated her 4th anniversary with the transplant a few days ago. She posts on this board as "Rachel in NY".


So this is 'worst case scenario' - but keep in mind this happened bc we didn't know anything. You and your doctors are aware of your daughters condition, and will moniter her and make sure she's treated and you will hopefully avoid the complete renal failure and all of that.

Best of luck to you and your daughter!
Shelley
Posts: 81
Joined: Fri Apr 20, 2007 5:01 pm
Location: Devon

Post by Shelley »

Hi Margaret,

I was born with only 1 kidney which became severely scarred because this went undiagnosed as a young child despite continuing UTI's :!: However after reimplantation of my ureter because of contuing reflux at aged 13 I am now 40 and just starting to get some conflicting information regarding my renal condition which I am seeking a second opinion with. I have managed to mother 2 lovely boys aged 21 and 19 and live a so called 'normal' lifestyle :lol: I believe I am one of the lucky ones so far :!: . I agree that this is because I have a positive attitude to life :!: something which you can instill in your own child when you make her aware of her condition.

I know in my situation I have coped with a single scarred kidney and this could possibly be the same for your daughter as long as she suffers no other complications. It is true that the consultant cannot say she will or will not need dialysis or transplant when she is older because it depends how our bodies are with our own conditions. I know that high blood pressure can affect the kidney as can diet, smoking, drinking and being overweight :!: These are things that may affect your daughter's only kidney as she gets older but as the consultants are aware of your daughter's condition I would suggest that you look at the following websites for some guidance
http://www.renal.org/
http://www.dh.gov.uk/en/Policyandguidan ... /index.htm
http://www.healthline.com/search?q1=kid ... %20failure
http://www.medicinenet.com/script/main/ ... ekey=77120

I too have looked at these websites and it has given me ideas for questions to ask my consultant which is all I believe you can use it for.
You can also ask for an independent second opinion through your gp if you are still unhappy and the ICAS can be contacted if you do not feel you are being treated fairly follow this link for independent advice which is free. This is not a medical claims line like some of the ambulance chasing ones, they act in your interest and will support you with documentation to ensure that you receive the answers you need, and will also accompany you if necessary to appointments as a free advocacy service. Something which I think everyone should know about! The ICAS only deal with complaints etc about the NHS and no other services and are as I said before completely independent so you can be sure of authentic views and advice. :lol:
http://www.dh.gov.uk/en/PolicyAndGuidan ... DH_4087428 they are independent of the NHS and not NHS employees as are the PALS service that hospitals try to resolve complaints and issues through. :lol:
Keep in touch it would be nice to know how well your daughter is doing. Keep us posted and fingers crossed hope all goes well :lol:
magmck
Posts: 3
Joined: Wed Jan 11, 2006 6:49 pm

worried mum

Post by magmck »

Just an update -
My daughter had her kidney removed on Friday (laproscopic). Everything went really well. By Saturday she was sitting up and able to get out of bed for toilet. Sunday afternoon she was able to go to playroom, and we left hospital Sunday evening.
Margaret
Elaine
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

kidney removal

Post by Elaine »

Glad to hear all has gone well for your daughters operation. Keyhole surgery is the way forward with so many advantages etc and early discharge home etc. Hope she continues to do well.

Best wishes to you all Elaien & Rach :D
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Shelley
Posts: 81
Joined: Fri Apr 20, 2007 5:01 pm
Location: Devon

Post by Shelley »

Glad to hear your daughter is up and feeling better. I bet you're all glad to be back home :)
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