3a kidney disease

[Vonnie10]

Hi I’ve been for a medical today on my report it state I have stage 3 kidney disease this must be a mistake surely a dr would have informed me and sent me to a renal dr ?

[medway-lady]

Disease or injury as mine is injury and only happened very suddenly in October mine is at 12% now 15% I was in hospital for a good while have you been called in ? Mines down to a medication. It might be different in your cae if its disease but first general hospital then Renal Transplant Team. Mine are lovely.

PS I hardly drink, don't smoke, not overweight and had masses of tests, You can pm me,

[Vonnie10 in reply to medway-lady]

Medway lady I’m sure she said disease but wouldn’t I be under the renal team it’s like out of the blue I went for a medical over work related stuff today this is random this was on my medical report fron my dr for them about my condition not a medical as such, see how my condition effects me and so on and if I’m fit for work. I’m very confused cos no one as ever mentioned my kidneys ever, surely a mistake on my gp part ? And surely if I had many stage of kidney disease I would babe under them ?

[medway-lady in reply to Vonnie10]

No many stages look up NHS online it explains well. Mine is stage 4 and I had really no symptoms to shout about, just a bit tired. It was the RA nurse who discovered the problem and was in hospital in 4 hours as they called me in. Disease might be different as it could depend on the type whereas they did'nt know what I had for 3 weeks. You can recover kidney function as well so it could be see how we go over a couple of weeks. Either way you need proper advice so call the GP I assure you that my treatment has been good and all RA meds were stopped. I know mine is very rare but also its a good reason not to just take off presciption stuff as Ibrufen can do strange stuff. In my case Omeprazole and its now life changing event but I'm not too worried as I know in good hands. Try not to panic as my kidneys went from 89% working to 12% in a couple of days and that apprently is very very rare. You must not worry to much and rest as its suprising just how bad fatigue can get this type of fatigue knocks RA's into the casual inconvience. I can't cook, or walk far and yes I led a normal life with the RA.

Do pm me and try to get hold of a GP and talk to them also don't listen to those who tell you to just carry out as you can't. You need rest and I also had a biopsy and many scans too. I know what a shock this is and add your not alone, as I've bought the tshirt and now taking over 25 pills a day and trying to stay posative

[Vonnie10 in reply to medway-lady]

Medway lady thanks I’ve got the gp ringing me tomorrow x

[Cheylann in reply to Vonnie10]

I would be so worried if I read that I would phone GP to find out what it means. I mean u must have been frightened to see that. Find out fm source if it's a mistake.

[sylvi]

One would think so darling.xxxx

[Amy65]

Hi Connie 10 I to found out by accident I had stage 3b cronic kidney disease it was on my medical notes .I saw a different gp about my RA and mentioned my kidneys he said now we know u have ckd we know to keep an eye on u.lol.rheaumatolight stopped my unsaid arcoxia put on letter to go reason due to renal failure amy

[Vonnie10 in reply to Amy65]

Amy I know your one is a 3b so what the treatment for you ? X

[Amy65 in reply to Vonnie10]

I'm not sure was a BP clinic today and my kidneys were mentioned as they are now leaking .nurse said they will put me on tablet but need to c gp.cant get appointment till new year I'll let u know amy

[oldtimer]

Firstly - have you had more than one test to confirm this?

Secondly - this type of diagnosis based on testing seems to have increased and may or may not need action to be taken.

Thirdly - any diagnosis should be discussed with the patient - so ask why it hasn't been and what the implications are for you as an individual. Do you need to increase your fluid intake? Decrease your protein intake? Or just have monitoring? Etc. This was NOT a good way to find to find out!

[Vonnie10 in reply to oldtimer]

Thanks old timer I’ve got the gp phoning me tomorrow regarding if it is or if it’s not . X

[helixhelix]

I think treatment for the early stages of CKD is lifestyle changes, and avoiding NSAIDs, so it's dreadful that you have not been informed before so you could take steps to recover function. Have your blood tests shown any changes over the last year or so?

Hope you get through to GP tomorrow.

[Vonnie10 in reply to helixhelix]

Be on,y just found out by accident if you like got the gpringing me tomorrow . X

[Vonnie10]

Helix like what kind of changes ? X

[medway-lady]

No not lifestyle according to my Consultant. It depends on whats wrong as Oldtimer said its about fluid intake, potassium and numerous other things. As I've said it can happen very quickly and I don't want to frighten anyone so not really going to say more. Blood tests show kidney function going up and down its normal its depends on so many factors. Be careful don't take any stuff off prescription including so called 'cures' or vitamins or stop anything on, leave it to the experts and they will advise you re NSAIDS. I've been advised to drink 3 litres a day but you will be different so don't do that unless advised too by your doctor. Even he might not know and it'll be a referral or another blood test in a couple of weeks to see what is happening. Just do not panic the NHS is very good at treating serious stuff and bye the way I get very cold and one persons cure might be anothers poison so don't risk too much partying and crowds cold and no booze over Xmas as that will not do you any good. Take it easy as the kidneys control blood pressure and affect so much its only for a while. xx

[helixhelix in reply to medway-lady]

Lifestyle changes include salt, fluid intake, potassium and so on. And yes, only as advised by doctors.

nhs.uk/conditions/kidney-di...

[medway-lady in reply to helixhelix]

I'm under Kent Transplant Team and everything tastes salty its a symptom of kidney failure. Weird to eat salty ice cream, drink salty coffee and tea etc. and it gets worse at night. Its an odd condition which has made me realise how fragile life is.

[Hidden in reply to medway-lady]

Oh dear. Really sorry to hear about your kidney problems, and Vonnie's.

My son was born with chronic renal failure. He was on antibiotics for ages. In his case he was born with baggy plumbing. He sees consultant once a year, and seems OK at the moment.

[medway-lady in reply to Hidden]

Only just seen this and that is so sad with little ones. It must have been an awful time as an adult the blood tests are bad enough but for a child or baby. I've got permant antibiotics along with somuch other stuff. The Dose it box my husband bought as a joke is really good. And its technicolour so jazzy too. No discrete pill box for me !lol. Its great to know they are looking after him well and is ok because children are so precious. My son climbed Everest earlier in the year a b----y idiot at times no idea where he gets all the energy from, as I still worry and he's happily married and 36. xxx

[Vonnie10]

Medway I will find out more tomorrow more . Thanks x

[medway-lady]

I'll be thinking of you and get a good nights sleep.x

[Vonnie10 in reply to medway-lady]

I’m of to bed now night x

[Chester02]

Hi I too had a shock of my life when CKD was mentioned in a general letter about my treatment. I had no idea of this and I was shocked! I later asked my Gp and she said it was stage 2 and not too much to worry about but of course I’m worried as who wouldn’t be? I’m going for an annual check up soon so will be asking more questions about this.

[Vonnie10 in reply to Chester02]

My gp confirmed it I’ve had it since 2016 she said drink more and do a low salt diet,I’m disgusted no one thought to tell me it’s disgraceful mines stage 3 what next I wonder. X

[Mmrr in reply to Vonnie10]

Vonnie10, it's a shocker, they have no right to keep any medical information from you. If you have the energy I would take it further.

I got all my medical notes a few weeks ago and found out I had been tested for rheumatoid factor 5 times in my life, no one told me, and I'm on the ball with GPs.

[Vonnie10 in reply to Mmrr]

Mmrr the gp rang me she said a letter had been sent out to me in 2016 I’ve had no letter about this she said to drink more and a low salt diet no referral to no one not even a dietician no educating me on it at all I’m so upset, it just seem to be getting worst and worst, I’m reading info on it what’s does it all mean I’m so confused the gp as been giving naproxen’s are they bad for me now?

[Mmrr in reply to Vonnie10]

Perhaps as a minimum ask for a referral to a dietician and review of your drugs ? If the GPs don't know then a referral to who does is unreasonable.

I also get a print out of my blood results every time they are taken. As I discovered that whilst I was being told my blood was 'fine' my White cell count was low (pre DMARDs).

[medway-lady in reply to Vonnie10]

Ask the RA consultant as its about risk and if it was the meds like me you'd have an injury not a disease although an injury can be a symptom of a disease. Are they testing again as kidneys do recover. I'm sure that you'd be referred if it was serious and you'd see the Renal Consultant before a dietician so thats who I'd ask to see first. Kidneys control blood pressure which is why it is taken so often it may be that yours are still working ok and need monitoring not intervention at the present time. It can lead to heart failure so you'd not been left alone without treatment if it was needed. Now you know and its not right you were not told face to face I'd push to see the right professional to know excatly what is the function and long term prognosis.

[nomoreheels]

Well something went wrong didn't it? What a shock for you, I hope your GP has now eased your mind somewhat.

Not me but by h has diabetes so has renal bloods done but had been poorly managed since his previous diabetic nurse left plus the meds he was well controlled on previously won't be prescribed in the UK here due to cost. Anyway, he was told he had chronic (Stage 4) kidney failure & unless they got his blood sugars down & changed to insulin injections he was looking at end stage by the end of the year. He's been seen by a Nephrologist 3 times & at last months appointment he was very pleased with his progress (diet & somewhat better controlled though not settled diabetes) he doesn't see him for 6 months. He will remain under him long term but I hope this helps you a little.

To say you found out as you did they do take these things very seriously so please be assured if it's deemed necessary you will be referred to see a Nephrologist.

[Vonnie10]

Thanks Medway I’m going to take a break from here because it’s all overwhelming to me . Have a nice Xmas and new yearx

[Shalf]

You take your time with everything Von. You need time to take in new information about health. If I was in your shoes I would take a bath, relax, don't over think or read too much on the internet. Make an ppointment with a GP who is understanding and listens. Ask him/her to explain exactly why, what, and how and where you move forward for whatever health care you need. It's unreal and unfair your getting this sort of news at this time of year where surgeries and hospitals run with skeleton staff. I feel for you! Stay calm and take it easy! Always here for you. X

[medway-lady]

Mine is 6'4" very althletic and fit a Group Scout Leader with a very responsible job. He was small when born early, and no idea what stork dropped him in our home because we're both short and lazy.lol

He's even blonde whilst we're dark haired maybe he's a cuckoo as he likes jumping off cliffs and kayaking around the coast. His wife is the same and we just laugh now as I'd die of worry if I knew all the stuff they do. They paddleboard dressed as pengiuins and rabbits last Christmas for charity not sure what the costumes are this year. But we'll watch ! I'm glad your boy is now 26 but we never stop worrying do we? Mine had a couple of operations when little and I like you cried buckets but even when he was at uni he got ill and had to have surgery I still cried even though he just took it in his stride. Mind you he has no empathy, never let him loose with any sort of medical stuff as he just does'nt feel a thing, or at least if your family. He's probably really nice to everyone else. Me from him the other day "its just a splinter" when he's dug so deep the blood is pouring down the finger.lol x

[Hidden in reply to medway-lady]

Oh he sounds a smasher...He's really living, good for him!

Nope, never stop worrying.