Somewhat annoyed and confused regarding CKD

Posted , 4 users are following.

A little background first. I am 58 and have no living family. For many years I have suffered from arthritis, COPD and severe migraines.

Since I am on my own, I decided to do a legally binding Notice of Advance Decision which I submitted to my GP surgery. I don't really see eye to eye with them but due to all of the surgeries in my area being owned by the same company, I have to put up with things.

Anyway, I submitted the paperwork in April last year and they eventually added it to my records in October last year.

I had a good read of what they put and was very surprised when they had listed the primary end of life care diagnoses CKD stage 3B. This had been apparently diagnosed in 2013.

Surprised cos I actually had no idea that I had any form of CKD, I have never seen or been referred to any specialists for CKD, never had any specific treatment and recommendations...nothing.

When I asked them what was going on, I was met with well I guess the letter got lost in the post. So me being a curious sort of person I did some homework and discovered that ibruprofen is a no-no...having been prescribed it at 400mg to act as a go-between for my Tramadol for the last 20+ years, my anxiety started increasing.

I am on several powerful medications, some of which are meant to have blood tests at regular intervals....I have had 3 blood tests since 2010. I am housebound, my GP is about 500m away and trying to get a home visit is a bit like a mission impossible.

No-one will talk to me about the CKD, what measures I should be taking etc. I feel totally let down (not the first time by the NHS - in 1996 I needed a hysterectomy for endometriosis and was told everything was gone despite having symptoms every month for several years....in 2007 my bowel blocked and a scan showed my ovaries were still there and endometriosis was everywhere, I finally got rid of 80% of the ovaries in 2010) So my trust in the NHS is shakey to say the least and now this CKD diagnoses that no-one told me about.

I have done the Notice of Advance Decision cos I didn't want to be a burden on anyone....the last thing I expected was to discover that my kidneys are packing up and have been for the last 10+ years.

Any advice on what to do next would be appreciated cos I am so annoyed, confused and anxious and looking things up online is only making matters worse.

Thank you in advance

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8 Replies

  • Edited

    what you have described is neglect on many levels. start filling a complaint and keep pushing for a response.

    for Kidney issues ask to see a specialist. you have many options to treat kidney issues.

    you are far from the end life decisions.

    this is when YOU must do your own research and become your own advocate. important to have info on what can help you now and in the future , rather than the past .

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  • Edited

    Hi ally71638

    I have a similar story to you. Back last year via a phone call to my Dr (non CKD related) I was told that I had CKD too, since 2014! He just said it sounds worse than what it is. I have stage 3A. I was very surprised/annoyed like you!!!

    I am female and 63 yrs old.

    'Surprised cos I actually had no idea that I had any form of CKD, I have never seen or been referred to any specialists for CKD, never had any specific treatment and recommendations...nothing'

    I was the same as you then I had flank pain and the Dr referred me for a CT scan. I phoned my Dr's receptionist for the result and she just said it was OK.

    I too was taking ibuprofen but my Dr told me not to last year but why only last year if I've had this since 2014!!!!

    How awful for you to also find out you still had your ovaries when you thought you hadn't! I too had a full hysterectomy in 2010, well I hope I did and my ovaries are gone!

    I have osteoarthritis and I have had chronic sciatica since my 30's, so any pain in my back I've just put it down to those.

    I'm sorry to hear that you are housebound .... I cannot give you any advice but just letting you know you're not alone.

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  • Edited

    these stories of not being aware of Kidney Disease for years or never informed by doctors visits is certainly the results of pure negligence. these doctors need to be brought up to the top levels of the system and reprimanded harshly . plz file complaints not only for justice for yourselves but for the many others who were also left in the dark and never knew that there are treatments for KD.

    remember diet is very important see online why and how to turn this disease around and manage .

    ask your health system for further evaluation and to see a kidney specialist and dietician.

    you can turn this around . some medications also needs to be adjusted.

    take the time to read about this disease and become confident in knowing how to manage KD.

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    • Edited

      Of course ... there are many resources on the internet. look up...Diet for KD ...

      There you will see many dieticians who specialize in food good for the issues you have and generally good for everyone to follow.

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  • Posted

    Hi there

    I suspect they have done the same with me hidden things from me as when they discovered I bleed from my p and got a large prostrate the doctors or techs used a baby mnri scanner later that day a doctor confirmed the plus he said I had to drink lot of water because I'd got knackered kidneys word for word but there's no note of it made in my immediate file to compound it I can get tired and get dry skin plus other issues in 2017 I was sitting next a psychic medium who I was going to have kidney disease I thought he was picking up on vibes of my brother who is a severe alcoholic, its funny how these health problems can Change you life completely, for myself I'd not long retired I'm also somewhat annoyed at the medical establishment s as the are lying to people . my cathata had popped out so that meant I could wee with out meaning I would go into retention this also apples to the opposite I phoned the dn for more advice as I was shaking at first as to what to oh she said you can leave till next but that meant I'd be in retention for 12 hrs also meant that my kidneys would damaged even further it does not take much work that fortunately I there was a good doctor on a and e who knew exactly what to do

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  • Posted

    yes I beleave there killing to releave NHS of burdensome patients thing is we paid our national insurance contributions and taxes we help to support them no taxs no NHS

    ive no idea what do next but considered death as a more comforting way out I don't suggest you do it, it's just that I developed a lot of other complaints in a short space of time less then six months what went through my mind at the the was this a good start to my retirement, good luck finding a solution

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  • Posted

    my DH is in end stage kidney failure. on dialysis 3 times a week. in and out of the hospital . has had several surgeries to open blocked veins, stents placed in various areas and replaced veins, amputations surgery today on the other leg and gangrene in foot . another partial foot amputation. this should have been done months ago before gangrene started and infections. open sores all down both legs. then its a fight thru every step for health care here in the US too. i am so disappointed in the medical system we pay thousands for health insurance and deductibles and medications... every year our whole lives. and the system is a mess . hospitals closing and nurses and doctors quitting. it's not good. this has been goin on for years... so before you all complain to an extreme, then walk a mile in my shoes. watch your loved ones suffer while waiting for medical treatment from a doctor and deal with our broken medical system.

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