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Original poster

Kidney Biopsy help!

19 replies

bambiandthumper · 02/01/2011 23:04

DTD 3.5, is having a kidney biopsy this friday, I have a thread about it in Childrens Health, here, but I thought people might have more experience over here.

I have read the GOSH information leaflets so I know what is happening technically, but I was wondering if anyone first hand knowledge of it could talk me through the procedure from a less surgical point of view, just so I can be fully clued up. :)

TIA

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Northernlebkuchen · 02/01/2011 23:18

Hi

Have read through your other thread. I work in admin on an adult renal unit. The only things I know about biopsy are that it seems a pretty straightforward procedure but that sometimes (rarely) it has to be repeated because the samples aren't enough for diagnosis.
In terms of GFR - it's a useful tool but nothing is absolute about it - some people feel really ill with a GFR of 10 but then others don't even end up in hospital till it's about 3-4! There are lots of interventions that can be done to improve her function and there are developments all the time. If at some point you do end up looking at transplant (which is a long, long way away from where you are now) then there are lots of live donor transplants happening and even if you or relatives don't match there are pooled and paired programs which can match donors and recipiants. I hope everything goes smoothly next week - am sure it will. Depending on what happens you might want to ask about Renal patient view - this is a website produced by the renal community that allows patients to access info and see their blood results and letters on line. I'm not sure if paediatric patients are included at the moment but it's worth asking about if you do end up doing quite a lot of bloods etc as it would allow you to keep an eye on them. link here

Original poster
bambiandthumper · 02/01/2011 23:37

Northernlebkuchrn
Thanks! DD's GFR is 13 so not yet critical, but still in kidney failure. Luckily she appears absolutely fine, otherwise I would have taken her to the doctor earlier and hopefully we can get start treatment before she starts to get too poorly.

I know you work on an adult unit, but out of interest what is generally the most successful treatment. Is it medication, or more physical treatment such as dialysis?

Re: Transplant, I really, really hope we don't get this far but it did come up at GOSH last week. Her consultant said if this will be the case he can not give an accurate timeline till after he has all the results, but if she were not treated/ continued to decline in function at the rate she has at the moment we would be looking at transplant around 8 or 9 ish, though this is obviously complete guess work. She has the same blood group as me, and fraternal twin and younger sister, but I can't remember Blush their blood groups. However I know a lot of other factors are imperative in matching up kidneys.

OP posts:
Original poster
bambiandthumper · 02/01/2011 23:38

and a* fraternal twin

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Northernlebkuchen · 02/01/2011 23:49

Dialysis is a treatment used for end stage renal failure - which is nearly always irreversible. It replicates some of the functions of the kidney but transplant is a far more effective form of treatment - because 4 hours of treatment every other day or whatever is never going to be as good as a kidney working in your body. However what you want for dd is for treatment to stop things getting to that point. So that will probably be medication - or sometimes work on plumbing so that kidney fuction improves. What your dd probably had before was dialysis to treat her acute renal failure. Acute dialysis is a short term measure whilst the kidneys improve. If her function is now declining and continued to do so then that would put her in chronic renal failure which unlike acute doesn't reverse as much if at all. Even if they can't stop the rate of decline - and they may well be able to - it's a very inexact science to say absolutely when somebody would need renal replacement therapy - transplant or dialysis - in adults some patients are 'pre-dialysis' for years and years. You can look at a chart of declining GFR and put a rough figure on it but nothing is certain. Do you mean her GFR is 13 by the way? That is quite low and doesn't fit with the other things you mention. Did you mean 30?

Original poster
bambiandthumper · 02/01/2011 23:52

Yep its 31, am using DH's ipad and struggling with the touch typing :)

I am going to read through that last answer properly in the morning and reply properly with my laptop, but thank you so much, your an amazing mine of information!!

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Northernlebkuchen · 03/01/2011 00:01

Happy to help if I can Smile

IslandMoose · 03/01/2011 07:25

Hi Bambi,

Northern will be a better source of information than I am, but I just thought I'd mention that the standard of renal care in the major London hospitals is fantastic. Whatever treatment is necessary, your DD should be in the best possible hands.

I had a kidney transplant at Guy's two months ago having been on dialysis for 18 months previously and the contrast is incredible - I feel 10 years younger and suddenly have the energy to do things like play with the DCs again.

All best wishes to you and your family.

Northernlebkuchen · 03/01/2011 21:06

Island - great to hear your news Smile My best days at work are the ones when we hear about transplants. Bitter-sweet of course because it's a gift of life that can come from a family's sorrow and we don't forget that.

Original poster
bambiandthumper · 04/01/2011 10:52

IsandMoose, I'm so happy that your transplant went so well. I'm really hope that we will never get that far with DD, but it is very reassuring to hear how well you are doing afterwards, and how good the standard of care you've experience is.
May I ask if you received your kidney from a family or unrelated donor?

Northernlebkuchen, We are being admitted as a day case for the biopsy, but I have been told to be prepared to stay overnight afterwards. You don't know roughly what the likelihood of this happening is?

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Northernlurker · 07/01/2011 23:01

Just wondering how you were getting on. Sorry didn't see the question about overnight stay till just now. Tbh I'm not sure - and I guess you know now any way. Really hoping you and dd are doing ok and that you get good results.

whoops · 07/01/2011 23:06

Bambi

Just seen this thread, ds (9) had a biopsy 2 years ago and is having another next week. He has to have them every 2 years due to the medication for his kidney disorder he has. Hope your DTD was ok and didn't have to stay in over night.
DS had to stay in for a few nights when he had his 1st one as they couldn't get his blood pressure down he was put on tablets to control it so I'm hoping he will just be in for the day next week.
Why is your DTD having the biopsy if you don't mind me asking?

Original poster
bambiandthumper · 08/01/2011 15:14

Thanks whoops, DTD had her biopsy yesterday, we got home this morning. Her op was a tad delayed and she took a very long time to wake up from the anaesthetic and then was quite upset, but apparently this is very common if they go under upset so they decided to keep us in. This was ok as we were prepared for it, and DH stayed with her so I could run home and sort out DTS and DD2 with our nanny, and then he went back to look after them.

GOSH was great, and the play specialists kept her very entertained and even managed to get her to have a small drink and a wee, which neither the nurses, DH and I failed to do. DH went into the anaesthetic room with her, which she didn't like one bit, and he said it was quite upsetting to watch her suddenly go floppy.

We have another appointment in 6 weeks time, and have to start her Captropril until then, though her consultant said he would obviously call if there were any big worries.

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Original poster
bambiandthumper · 08/01/2011 15:18

Sorry, posted too early.

DD had the biopsy because she had a very low GFR (30). This was found at her final follow up check after she had HUS with renal failure last year. She has far more damage in one kidney then the other, and they are trying to establish if the one 'bad' kidney is damaging the other, or if she has a gradual loss of function in both kidneys.

How is your DS whoops, may I ask what his disorder is, and you found out about it? Also how is he (and you) managing the treatment? Good look for your biopsy next week, will be thinking of you.

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Geepers · 08/01/2011 15:26

Just read ahead and have seen your DD has recovered well from her biopsy.

For anyone else reading this in the future, my DS had a kidney biopsy when he was two, he was taken in the nigh before for observation and home the same evening as the procedure. He was fine.

whoops · 09/01/2011 23:15

Glad DD is ok, I know what you mean about when they go floppy, last time ds was holding a toy steering wheel and I had to grab it quick before it hit him on the face! I am worried about how he will react this time though but fingers crossed he'll be fine!
DS is fine, he has FSGS and nephrotic syndrome. You wouldn't know it though and it was found by chance!
He is on Ciclosporin to help control it.
This will be his 2nd biopsy so hoping we will be out on the same day! Not looking forward to being at the hospital at 7.30am though!

PixieOnaLeaf · 09/01/2011 23:26

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Original poster
bambiandthumper · 10/01/2011 17:14

Geepers and whoops, that is very reassuring to hear how well your DS' are doing despite their kidneys. Good luck for your biposy whoops!!

Thanks Pixie :), your right, they are amazing, completely invaluable.

Have you or your DH been staying with your DD for 9 weeks Shock, or you go home for the night and spend all day at the hospital? Is there any plan for her to be discharged soon?

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PixieOnaLeaf · 10/01/2011 17:22

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tammy2k11 · 18/03/2011 13:15

hi, i just wanted to message too see if i can be of help too you, my husband has renal failure and after 6 years of dialysis had a transplant on 20/1/11 still early days but things are going ok so far,

can i ask do you know your dd,s blood results creatinine/urea/potassium etc.

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