frustration

[boycie]

hi all I've just come back from a visit to my kidney specialist and am so fed up. My gfr is 27 to 30 and they've just told me that none of my symptoms have anything to do with my kidney disease. and that range is quite normal! and I must have other health issues. I'm sure other people feel the same how do you cope. at the moment I don't want to go back to the specialist anymore they make me feel as though I am making things up!! has anyone got any advice.

[buryboy]

I know this feeling also well. I was diagnosed when my function was 27% I use to see a Dr smithard who was fantastic but he retired now I see a different Dr every time I go is so depressing you feel pointless just another tick in the box to cover there back.

[lillyrae]

That is so disgusting ..someone should try to start up a petition about kidney disease..Theres just no help anywhere yes online certain things ..how do these drs no what its all about they dont have it im disgusted myself and my gfr is 57....Ive had no help and drs look at me as if im stupid when i try to get help....you could try ringing n.k.f. helpline maybe they can help you..I hope you get some answers ....

[dizzydi]

Mine unfortunately dropped 7 points, in Feb when I was diagnosed CKD stage 3, it was 55GFR, and last weeks results 48gfr.

My Dr says its probably down to long term high blood pressure, so waiting to see a neph, my Dr referred me in Feb, but still waiting for the appointment.

When I first found out last May my GFR was 52gfr, then November 2012 it was 50, Feb I had 2 readings in one week @ 51gfr 3 days on results at 55GFR, now despite following the relevant diet, meds, no salt, cola's, drinking lots of water, its suddenly down 7 points to as stated 48GFR, gutted.

I am 44, female/white, weight about 8 stone 9 pounds, height just over 5ft 4in. Not sure what they take into account really but I have done everything possible to try helping my function.

[googie]

Boycie, what are you symptoms?

[boycie in reply to googie]

I have shortness of breath, restless legs, loss of appetite, bitter taste in mouth, bad fatigue and weak and painful muscles

[phillen in reply to boycie]

yes these are all related to your declining kidney function, my hubbie will vouch for that!

[nikityler in reply to boycie]

Boycie, these are definitely symptoms to kidney function decline. I had the same problem with my kidney specialist, my function was 20%+ and bloods all in the normal range. Unless they are going through it they can only compare you to the book and the book is not always right!

I am now down to 14% function, still with all bloods in normal range.

All I can say is rest up, if the loss of appetite goes on to long, you may need to see a dietician, I am now on Fortisip due to no or little appetite. x

[phillen]

you need a new consultant my husband had terrible itching for years even at stage 3 he used to say it was'nt worth telling them anything else as they don't take much notice!

& certainly with your egfr you would have loads of symptoms my hubbie was very tired,itchy

restless legs had bad spots that looked like acne (which were phosphate spots)

it's so frustrating when they treat you like your making it up! because he is on CAPD at home he has a home care nurse specialist & she is excellent & is very helpfull but you shouldn't have to wait that long really for help & advice, i think the consultants are not interested in the actual day to day living with it!

[Hidden]

I totally understand. Over past 7 years my egfr has dropped from 60 to 17. At no point has a consultant acknowledged or tried to alleviate symptoms I can only put down to my declining kidney function.

From stage 3 onwards I have experienced significant fatigue (always dismissed by doctors as "everyone gets tired")

I began feeling like perhaps I was lazy and my constant need for sleep was psychogical.

I really hope my general lack of wellbeing is not in my head and once my kidney function is replaced I will feel better.

I suggest keeping a diary of your symptoms so you can show your doctors at appointments.

Best wishes, Karina

[dwadvani]

My GFR is 37 and I am planning stem cell treatment in India. There are other alternatives available like nature cure etc here.

[kirstie43]

Hi I'm a ckd3 , I can agree about docs not knowing , its a joke ,I can remember saying about feeling tired all the time and was told it has nothing to do with my kidney , well it is and bags under my eyes and puffy hands and feet , its a joke just because they call it the silent disease , well I don't.

I know I've got it

[poppydolly]

i am now at 7 and throughout i have had no help or advice on symptoms, die etc. if it were not for forums like this i would be totally alone and in the dark. each visit to the clinic is like an episode of the generation game - remember the conveyor belt? one nurse weights you then you move to the next room for another nurse to take your bp then you sit and wait to see the specialist. when you have been in there 5 minutes a nurse comes in to interrupt which is the sign for "your times up"! dont even get me started on trying to get help, advice from the charities.

[Hidden]

Same with me GFR 47 always tired, restless legs ache and pains, pins and needles in legs and arms, always told the same it not the kidneys have had lots of blood tests to find out why I feel like I do, all come back ok, I also have coeliac disease but the test say i'm clear of gluten have been for a long time so it not that,...I get told it depression, yeh depressed with always feeling so rough all the time!!

[SRN1969 in reply to Hidden]

High Venus I was also told my coeliac test was negative but bloods rests showed I was wheat intolerant. I now only eat wheat / free gluten bread and feel so much better.i also had restless legs and use the revitive machine that uses impulses on your legs . The relief was amazing.hope this helps a little .

[boycie]

I can not believe how many of us get treated so badly by drs. This site is amazing I dread to think how I would be without it. thank you all so much. I forgot to ask if anyone gets shortness of breath with mild activity.

[GrannyChris]

I can only chime in and agree with everyone else, because most of the time we are not urgent cases, our symptoms just get brushed aside. The only doctor who was really sympathetic had just been diagnosed as diabetic himself, and spent most of the consultation moaning about it! I do get the shortness of breath thing at times, but not all the time, with no particular reason. Ringing the n.k.f helpline is a good idea. Best wishes xx