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[Katejo]

At the end of 2015 I put the following entry on MM  "I recently had an ENT referral. I thought that my dizziness symptoms were linked to 2 recent UTI infections and said so. In a letter to the GP, the doctor says that I had attributed them to severe kidney disease which I have never had! The hospital has also invented a fictional name for my GP. I wonder whether I am being confused with someone else"
I wrote a letter of complaint to the hospital and also spoke to a GP about it. She said she would also complain to the hospital.

One year later: I had my endoscopy today which went ok. Just before leaving the hospital, I noticed on my past medical history on the results printout that i was supposed to already have chronic kidney disease stage 2! i spoke to a nurse who said I would have to go back to my GP about it. This afternoon i wrote a quick letter to the same doctor who made the complaint last year. Probably the same mistake never deleted from my records. No GP has said anything to me about kidney disease and the tests which i had back in September post UTI were clear. I have got a non urgent nephrology referral in Jan but that is just because of the blood traces in urine (as already discussed).

[Annie0710]

I had bloods done this year and my results are shown on our system online.  It says I have stage 2 kidney disease and no one has ever discussed it with me ! I read up that many people won't know they have it but it only goes up to stage 4?

A diabetic colleague only last week was telling everyone at work she has stage 1 because of her condition and when I said I supposedly have stage 2 she went quiet

My 2 brothers got each other's diagnosis and a lady on another forum had her notes crossed with a severe mental health patient and was then refused treatment she needed.  She consulted a solicitor I think to sort it

X

[countrybumpkin]

Loads of people have chronic kidney disease and Drs don't tell them because in most cases it never progresses beyond stage 2 so being told you have ckd worries people when they don't need to worry.  Other health professionals of course see your notes and know and this causes all the problems when the patient comes across records say at hospital. ( I used to work at a Dr's).

There are rarely any symptoms until stage 3 and sometimes not until stage 4.

Its still a nasty surprise to find out you have had it for years and no one told you though

[Annie0710]

You see this is a classic case where google helps as I like looked it up and was reassured.  It actually said CKD STAGE 2 if AKI has been ruled out.  The reason the bloods were taken was because of bloating and fluid retention

x

[Katejo]

You see this is a classic case where google helps as I like looked it up and was reassured.  It actually said CKD STAGE 2 if AKI has been ruled out.  The reason the bloods were taken was because of bloating and fluid retention

x

What do you mean by AKI ruled out? I don't have fluid retention or bloating  and was told that my recent tests for kidney infection were clear.

[Katejo]

I had bloods done this year and my results are shown on our system online.  It says I have stage 2 kidney disease and no one has ever discussed it with me ! I read up that many people won't know they have it but it only goes up to stage 4?

A diabetic colleague only last week was telling everyone at work she has stage 1 because of her condition and when I said I supposedly have stage 2 she went quiet

My 2 brothers got each other's diagnosis and a lady on another forum had her notes crossed with a severe mental health patient and was then refused treatment she needed.  She consulted a solicitor I think to sort it

X

Where did you read about patients not being told?  Not much good if you then fail to declare it to a travel insurer through ignorance and are taken ill on holiday and need emergency treatment.  Insurer then refuses payment.

[countrybumpkin]

Not every GP does not tell their patient but I did come across it, especially with old lady patients where the Gp thought they would only worry and so not telling them saved them the worry as it was unlikely to ever affect them physically. 

YOur GP can give you a list of diagnosed illnesses for insurance purposes if anyone was worried about forgetting or not knowing something for their travel insurance.

[Katejo]

Not every GP does not tell their patient but I did come across it, especially with old lady patients where the Gp thought they would only worry and so not telling them saved them the worry as it was unlikely to ever affect them physically. 

YOur GP can give you a list of diagnosed illnesses for insurance purposes if anyone was worried about forgetting or not knowing something for their travel insurance.

If I did have this condition, I would want to know to prevent it getting worse. I looked at an NHS site on the condition. It had a short video of a GP who specialised in preventing further kidney problems and one of his patients. It showed how he monitored the condition and advised her on improving her diet. I still think it is a genuine error on the part of the hospital doctor but I am trying to check this.

[Annie0710]

I had bloods done this year and my results are shown on our system online.  It says I have stage 2 kidney disease and no one has ever discussed it with me ! I read up that many people won't know they have it but it only goes up to stage 4?

A diabetic colleague only last week was telling everyone at work she has stage 1 because of her condition and when I said I supposedly have stage 2 she went quiet

My 2 brothers got each other's diagnosis and a lady on another forum had her notes crossed with a severe mental health patient and was then refused treatment she needed.  She consulted a solicitor I think to sort it

X

Where did you read about patients not being told?  Not much good if you then fail to declare it to a travel insurer through ignorance and are taken ill on holiday and need emergency treatment.  Insurer then refuses payment.

I didn't read patients aren't told
I read many people have stage 2 and are unaware of it as there usually aren't any symptoms

I don't know why it hasn't been discussed with me

The results say d if it's not AKI (I think kidney injury then it's stage 2 kidney disease based on my blood results)

To be fair the dr who ordered the tests I trust so unless I get more symptoms I'm not overly concerned

I've had many UTIs and quite a few kidney infections since puberty and a possible stone so maybe mine is from that

[Dennylou48]

Hi 10 years ago I was taken into hospital with a horrific pain in my side and found out I had polycystic kidney disease and 1 of the cysts had popped, obviously I was horrified to how this can be, I was told it was hereditary and I would have had them since birth unbeknown to me. I have always eaten a good diet and drink loads of water and that's all I have to do. You can go right through your life not knowing you have kidney disease ,if they don't cause any issues there is nothing to worry about. Xxx

[Katejo]

Hi 10 years ago I was taken into hospital with a horrific pain in my side and found out I had polycystic kidney disease and 1 of the cysts had popped, obviously I was horrified to how this can be, I was told it was hereditary and I would have had them since birth unbeknown to me. I have always eaten a good diet and drink loads of water and that's all I have to do. You can go right through your life not knowing you have kidney disease ,if they don't cause any issues there is nothing to worry about. Xxx

 
That condition is hereditary isn't it? I read about a family with it yesterday.  I saw a GP about something else today but also queried this. She confirmed that they have no diagnosis of the condition in their records which is good. The recent kidney blood test which I had didn't show a problem. She wasn't the doctor to whom I wrote last week and who knew about this from last year so she couldn't say any more about my individual case. She did say that many people of middle age and onwards do have a mild version of the condition which doesn't progress.  I will wait a while to hear from the other doctor. I will have to make another appointment quite soon (waiting for test result) so will make that with her if possible.

[dahliagirl]

Wow - this is an interesting thread!

I was forced to change GP recently, and one of the better things about it is that I now have access to my tests and prescriptions online.  At my previous GP, I was given blood tests (full bloods and rheumatic factor, I thought) but it now appears I had kidney and liver function, bone, cholesterol etc, which was enlightening.  I did not even know about the tests and was told everything was ok    apart from vit D which was 'deficient' (but turned out to be 38 so borderline, when I rang and asked for the number and shows as such online).

I had a kidney stone 10 years ago and apart from kidney function, that was it.  I thought everything had gone back to normal, but it would appear normal includes CKD stage 2. (Also, CKD1,2 etc has changed to G1 G2 etc and is taken with ACR - albumin/creatine ratio).  There was no further investigation as I was told they do not do this with a first kidney stone any more.

During the stone incident, my eGFR (estimated glomerular filtration rate) was 51 which was too low, so it was repeated and ok which turns out to be 79.  From my googling the top is 100 and a normal kidney function would be 90 or over.  They do not bother much unless it drops below 60, unless there are other problems such as proteinurea. This is a good website - there are tabs to click on near the top of the page which give more explanation.http://www.renal.org/information-resources/the-uk-eckd-guide/about-egfr#sthash.jlpehmvf.dpbs

My latest result was 71, which I thought was a bit rubbish.  I haven't had a urine test since I actually had the kidney stone in me (apart from a pre-op at hospital, which I assume they were happy with for anaesthetic purposes).

Part of my liver function test came back with raised bilirubin - outside the guidelines, but said normal.  No idea what this is about    Also, my cholesterol has crept back up, borderline.

[Annie0710]

I've just looked at mine and it was 78

It has dropped since my last one within the last 4 years x

[dahliagirl]

Mine has dropped from 79 to 71 in the last 10 years - not big enough to be important though.

I am not sure how accurate eGFR is from one test to another.  It is only an estimate to start with and just an indicator to go on along with further tests and symptoms.  It appears you can have a really good eGFR but your kidneys are working really hard to make up the difference.  I presume that this works the other way round too.    The renal association site is quite helpful.

I have just spent the last half hour messing with this cardiovascular calculator that it linked to http://cvrisk.mvm.ed.ac.uk/calculator/calc.asp  You can choose to have your chart made out of smileys  <off to do something useful>

[Katejo]

Wow - this is an interesting thread!

I was forced to change GP recently, and one of the better things about it is that I now have access to my tests and prescriptions online.  At my previous GP, I was given blood tests (full bloods and rheumatic factor, I thought) but it now appears I had kidney and liver function, bone, cholesterol etc, which was enlightening.  I did not even know about the tests and was told everything was ok    apart from vit D which was 'deficient' (but turned out to be 38 so borderline, when I rang and asked for the number and shows as such online).

I had a kidney stone 10 years ago and apart from kidney function, that was it.  I thought everything had gone back to normal, but it would appear normal includes CKD stage 2. (Also, CKD1,2 etc has changed to G1 G2 etc and is taken with ACR - albumin/creatine ratio).  There was no further investigation as I was told they do not do this with a first kidney stone any more.

During the stone incident, my eGFR (estimated glomerular filtration rate) was 51 which was too low, so it was repeated and ok which turns out to be 79.  From my googling the top is 100 and a normal kidney function would be 90 or over.  They do not bother much unless it drops below 60, unless there are other problems such as proteinurea. This is a good website - there are tabs to click on near the top of the page which give more explanation.http://www.renal.org/information-resources/the-uk-eckd-guide/about-egfr#sthash.jlpehmvf.dpbs

My latest result was 71, which I thought was a bit rubbish.  I haven't had a urine test since I actually had the kidney stone in me (apart from a pre-op at hospital, which I assume they were happy with for anaesthetic purposes).

Part of my liver function test came back with raised bilirubin - outside the guidelines, but said normal.  No idea what this is about    Also, my cholesterol has crept back up, borderline.

I can't view test results online so can't check figures. I asked the GP  last time but she didn't give the precise figure.
My 'fictional' test result said no protein in urea. Still waiting to hear from GP.