Help... Confused
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life 2 weeks ago was normal, my daughter was admitted into intensive care with high blood pressure, biopsy has been taken and now we've been told that her kidney function is only 10% and that she will need a kidney transplant. im So confused as she has never had kidney problems in the past. We are waiting for biopsy full report to come back with cause of failure all they've told us is out of the 23 cells they took 19 is infected- what I don't understand is what about her other kidney as they only took biopsy from one. Hospital discharge letter says both kidney are echogenic and demonstrate loss of cortico-medullary differentiation and are normal in size and no haematoma or fluid collection seen.....I was wondering as a worried mother if this has happened to anyone of you before, I am sorry if this is the wrong group for a family member I just don't know what to do there is no family history of kidney diease....thank you
1 like, 19 replies
louise5027 Chemgland
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They can tell from scans and blood tests the function of both kidneys so that's maybe why only one has a biopsy. Hopefully the results will come back with a reason so they can prevent more damage. Good luck
tony78174 Chemgland
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you say 2 weeks ago life was normal..., but kidney disease is often slow and insidious, so often the damage is done before any real symptoms appear it can be like cancer destructive and silent (although high bllod pressure can so often be the cause or the indication of kidney disease, it is a vicious circle, high bp can be a symptom of kidney disease and high bp can further damage the kidney, all people with high Bp should be referred for kidney fuction testing, but so many doctors neglect it. the kidney function test is a blood test that measures the body's ability to remove creatinine (creatinine = muscle wastage, the higher the creatinine level the lower the kidney function)
in regards to you saying "kidney are echogenic and demonstrate loss of cortico-medullary differentiation" this basically means that some areas of the inner and outer structures of the kidney are not distinguishable as deing inner and outer structures and that there is a raised structure in this region, obviously some type of growth, tunour, etc etc ?
this is why they did a biopsy, of the raised structure, (tumour ?) and this is why they didn't do a biopsy on the other kidney, because the other kidney obviously didn't have an evident raised structure.
just try to be as positive as you can, and although your daughter's function is currently 10% and this is very concerning,,,,., remember depending on her actual circumstance it is possible her function can increase through low protein diet and correct medical intervention.
my mother was diagnosed with kidney cancer 15 years ago, at that time her function (eGFR) was 19% since then her function has been up and down constantly fluctuating and she is still mobile, and active, she is alittle tired but up until now she has managed to avoid dialysis and she is currently functioning at 5% better then most people at 20% function.
i just wonder why they have told you she needs a transplant when her condition hasnt been fully exaimmed as yet, some people can regain significant function after intervention ?
Chemgland tony78174
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it also says on her discharge letter from hospital that her Cr level us 421 and that the bloods they carried out are. ASI screen were unremarkable: showed Pr: Cr 133, ANCA neg, immunoglobulins neg, TFT's normal, ASOT neg, Hep B neg, Hep C neg, complements normal, Hiv neg, anti DSL-DNA. It then goes on to say renal failure cause??
Im sorry about asking you all of this its just that I know nothing about the condition, do you think I should get a second opipion and if so where would you recommend. Many thanks Sarah
tony78174 Chemgland
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regarding second opions i'm in Australia, i'm just curious they have discharged your daughter but haven't offered dialysis ? what is their future management pln for your daughter ?
..............also the test results you site have no real significance apart from saying your daughter doesn't have hepatiris, or Hiv, etc the key issues to focus on are her eGFR reults and her Blood pressure results.
did the hospital advise you about kidney Failure diet ?
MrsO-UK_Surrey Chemgland
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tony78174 Chemgland
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Saah i also wanted to tell you about renal Failure Diet.....
Renal Failure Diets should limit Protein intake. Protein can make the kidneys work harder and damage them further, but it's a delicate balance, although Protein is not GOOD for a BAD kidney, we must still have minor amounts of protein for general health, we can’t totally avoid all protein, it is a building block of our body, and if we were to avoid all protein muscle wastage will occur ….., and after all, Creatinine = Musle wastage levels are what the eGFR test measures to determine kidney function .... meaning to much protein is not good for a damaged kidney and it may also give a false eGFR result, i will strong advise everyone to limit protein and dont eat protein the day before a eGFR test as it can give a false higher result, meaning the result will suggest your Creatinine levels are higher meaning your kidney function is lower..
Also limit dairy……… Milk, Cheese, Yogurt, Ice cream, although we also need dairy for general health it should be limited.
Also don’t eat Stone-Fruit, (any fruit that has a Stone Seed) like Apricots, Plumbs, Peach, Cherries etc
Normally Potassium and Sodium are big issues for Kidney disease, so you may have to limit, pumkin, potatoes, banannas etc, it would be of benefit to do a google search of legitimate Renal Failure Diets.
i am not a Doctor, so please research any information i supply.
MrsO-UK_Surrey tony78174
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Wish I'd read that before my latest eGFR test last week!!
tony78174 MrsO-UK_Surrey
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yes many things can effect the estimated filtration rate such as...... Gender, Age, Body Shape, Body weight, General Diet, Protein eaten before Blood Test, etc etc
but the basic eGFR equation is this.......,
Creatinine clearance = 140, then subtract your age from 140 and this is your healthy normal filtation rate, (your Kidney function) so if you are 60 years old then you have to subtract 60 from 140 = 80, then this is your healthy normal filtration rate (we lose filtration ability as we grow older, and this is normal, so although a filtration rate of 80 would be normal for an 60 year old is not normal for a 20 year old whom should have a rate of approx 120.
this is a basic equation, although there are more complex equations that include more information such as... 140 - your age, multiplied by your Lean Body Weight, multplied by 1.23 if you are male.....etc etc
MrsO-UK_Surrey tony78174
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helen54849 Chemgland
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It is always a great shock when something like this happens. They will only ever biopsy one kidney due to the risk of a bleed so they will do a scan t=and then deciide which is the best kidney to scan then carry out the biopsy will scanning continously to ensure they go deep enough into the kidney to get enough cells from the core to get a diagnosis, while taking care to ensure the risk of the bleed is low. Louise is correct when she says they can tell the kidney function from both kidneys off a blood test. Thats what they did with me. I am now 9% and on dialysis. Whe the renal neph will do is obtain the results of the biopsy and then decide on the best treatment. Don't worry about the kidney function you can go a lot lower than 10 % and be ok. You will go and see a dietician, DONT CHANGE ANY DIET UNTIL YOU HAVE BEEN TOLT TO ITS DANGEROUS. You only have to change diet if for example your daughters potassium levels change, if you remove potassium from the diet when it isn't high you can risk it going to low and this has the same result as it being too high (heart attack) also posphate can change but again you will be informed of this from blood test results. Creatine of 421 is quite high. How old is your daughter? I would advise that you do some research on the different types of dialysis to see which type would suit your daughter. I would be happy to answer any questions regarding this if you like. Please prepare yourself that sometimes they don't get enough cells from the biopsy (I had two without a diagnosis) good luck with everything x
tony78174 helen54849
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this information is not exactly correct do a google search about kidney failure and protien there are numerous Legitimate websites devoted to this issue.
FROM https://patient.info/forums/discuss/help-confused-425514?page=0#1429986 ;
.....Protein and the CKD patient
Unhealthy kidneys lose the ability to remove protein waste and it starts to build up in the blood. Dietary protein intake for patients with CKD is based on the stage of kidney disease, nutrition status and body size. Counseling sessions with a registered dietitian are recommended.
.....your daughter is at 10% which is stage 5, trust me protein is an issue and needs to be limited and discussed with a Dietician.
Sarah generally doctors will not do a biopsy when they strongly suspect the tumour in Malignat, reason being if it's Malignant there is a high chance that some cells will escape and llater become metastatic so the fact they did an biopsy means they are suspecting it is Benign.
tony78174 helen54849
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are you're actually saying someone with Chonic End Stage Renal Failure with less then 10% function is ok and they dont have to control protein ?
helen54849 tony78174
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I was below 7% when I started dialysis, and the advice I have been given is it doesn't matter if you increase or decrease protien at this stage, that is from a dietician. Its easy to give advice when you have read about a condition but not everything you read is correct. I am sorry if you don't like this but unless you have been through this yourself (not seen someone else) then you have no idea really, this is fact. So what you are saying is that my renal neph and dietician are wrong? I would have to disagree as I am fine and very well looked after. I would also never want your pitty so please don't be sorry for me I am doing great by taking the advice of my consultants not what I read on the internet. I know people who have been at 5% when they have been diagnosed (more than one person) and they are fine. I think you will find your advice is dangerous if you change diet and levels are ok you can cause issues. The lady will have the correct medical advice from the doctors. Like I said you have just read information which is outdated of the internet, when you actually have renal failure and live it every day then come back to me, until then I will listen the qualifed people not you sorry!
tony78174 helen54849
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actually i studied anatomy/physiology and biology at the Advanced Diploma level and i have done alot of research due to my Mother's condition. she had a malignant kidney tumour, she had a a kidney removed, she currently has 7% function, and is resisting dialysis, trust me i know my stuff better then any Novice. i'm not saying that your Nephrologist or Dietician are wrong, but i am saying if my Mother had followed her Nephrologists advice she would have been on dialysis years ago.......... you see the great pitty is when you get to 10% or under they consider you a Write-Off so maybe your specialists are of this school of thought, in your case why should you limit enjoying protein when it's not going to change your outcome, but i can almost guaranttee you if you were on dialysis wating for a transplant, they would most certainly limit your protein intake............... you said, i shouldnt have an opinion because i am an observer not a sufferer, that i have no real idea, well that just ruled your Nephrologist and Dietician out as being able to have opinions also., you also say you know multipule people with 5% function and they are fine ??? nobody reading that statement will believe you at all, that is absolute rubbish, you lose any credibility at all with that deceptive statement. anyway this is nott suppose to be an argument between you and me, I am here to help [people like sarah not argue with people like you (if you want to continue this debate you should do it privately and not here, it helps no one) and i say again your information is blatantly inaccurate and dangerously stupid. stop advising people.
MrsO-UK_Surrey tony78174
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This is a discussion group and I believe everyone's opinion is valid and of interest - it can be taken or left!
With my experience of living with a sole kidney since childhod and worsening problems now, I know that as far as the kidneys are concerned they are a highly complex organ, and there is still a lot to learn about their workings, even by all the medical experts. I know that my kidney function/BP treatment is presenting my renal consultant with a problem as to how to treat - he calls me his "awkward patient"!
I send lots of good wishes to both you, Helen, and to your dear Mother, Tony.
helen54849 tony78174
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helen54849 tony78174
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tony78174 helen54849
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helen54849 tony78174
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