Frustrated with the lack of support and advice
Posted , 9 users are following.
Having worked for teh NHS for the past 9 years on a wellbeing team delivering health checks, I thought I should go for my midlife check and practice what I preach. So in December last year age 41 I went along to my GP.
My results were all absolutely fine, my BMI and waist measurement are in a healthy range, blood pressure normal, I so not smoke and hardly drink plus ecercise 4 times a week - so when they said my GFR was abnormal I was shocked.
Four more blood tests over the past 6 months are showing my gfr go from 58, 54, 56, 53 so the last appointment they gave me the label 'ckd stage 3)
I have no family history of ckd, no diabetes, no high blood pressure - I have not taken drugs, never followed a high protein diet and dont take ibuprofen regularly.
So the GP sent me for a ct scan - this came back that my kidneys are in the right place and are normal size - my bladder is working normally and I have no blood or protein in my urine.
So back to the GP who referred me to a consultant (a little confused I think that I have absoutely no indicators or precursers to CKD and am considered young to have these results).
The consultant has read my notes and refused to see me!!! Sent a letter back to the GP saying he needs to expalin my condition to me??
I am absolutely disgusted with this attitiude as as 10 minute appointment with a specialist may have put my mind at ease and answred questions I have around 'why'. I am booked in to see my gp next week and other than asking for a private referral I dont know what to do. I feel like I am just being told 'oh well there is no reason why, you have been dealt a bad card - deal with it and we will see you once a year for a blood test'.
I know I am far from in serious bad health and may never go on to develop later stages especially given my healthy lifestyle however, my children will now have to report a family hisory of CKD and I am sure they will want answers, I have suffered with insomnia for some years and horrendous water retention in my lower legs too - i wanted to ask the consultant if this was linked - I take iboprofen when running long distance (recommended by nhs physio) and salt replacement drinks - I wanted to ask about this too.
Reading about this disease I have found links to pre-eclampsia (which I had) and lupus (which my nan had) so had questions on this.
I am sorry for a long post guys and maybe its more common than I think that people are diagnosed with ckd and have absolutely no reason why - I just feel very let down that I have been given this label for the rest of my life and the nhs I pay into and work for dont want to help me sort the questions out clogging up my head.
Any ideas, questions, answers you may have will be really appreciated.
Thanks 
0 likes, 38 replies
elizabeth63848 josparks
Posted
Hi Josparks .. Sorry to hear you have not had good support. I have had CKD for 18 years since I had my ureters re-implanted in 1996..uk. I was 32 and no previous history or cause. They think it might have been endometriosis that caused blockages but quite unsure. I have been well since the major op in 1996. But in the last year I have been very breathless/wheezing. I have been told no renal consultant until I am EGFr 30!! Unbelievable. I have lost 30% of kidney function in 6 months and my gp thinks Meloxicam has caused
This and it could be reversible. New blood test next week after stopping anti-inflammatories 15mg daily. Currently EGRF 37 .. Was 54 6 months ago. Been reading NICE guidance and I shd be referred because of more than 25% kidney function reduction in short space of time. So yes i can sympathise fully with you, but as you say you want to be seen so keep insisting until they listen and read NICE guidelines re referral to renal clinic. Good luck and let me know how how you're getting on. Best wishes Elizabeth x
josparks
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josparks
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Egfr drops below 20 they will not see me. So I'm left with absolutely no idea why I have developed ckd, he kinda said that I'm just unlucky my kidneys have stopped functioning so well it my 40's as it would usually happen in my 60's. So nothing I can change in my lifestyle, no reason why it's happened, live life as normal was his advice.
I asked about the ibuprofen and hydration drinks when I go on long runs and he said infrequent use is OK.
So after all this I'm just left as a number on a risk register. Bad enough to be tarnished as diseased, not bad enough to require specialist info, support or investigation.
I'll have 6 monthly blood, urine and blood pressure checks and hope for the results to stay at stage 3.
Sad times for the NHS. I'm truly let down that ckd is important enough to warrant a check on a midlife test, but then you get diagnosed and they say 'oh well at lease we picked it up early. X
helen54849 josparks
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Wow is all I can say, its not often I am lost for words. When a GFR drops to around the 20 mark is when they ask you to look for a live doner and start the testing process (it is in Wales any how) at least you get the 6 months checks with GP and then if there is any change you can be referred. I am gobsmaked they wait until GFR of 20 before they will even see you. I have always been under a consultant and had checks. That will shut me up and stop me moaning about being harrassed by them then, turns out I have received excellent treatment. Hopefully you will stay at stage 3 for many years. I would still stay off the ibuprofen paracetamol is the only safe meds for CKD people. Keep us posted at your checks and good luck x
josparks helen54849
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I will definitely keep up to date on here, you have all been more informative and supportive than the health care that's for sure. My go said I'm only borderline stage 3 hence no referral. I guess the 6 monthly checks are something but I feel quite sad about it all. Like they take preventative measures by offering you a test but then leave you til you are really poorly to actually do anything. He said I don't require any treatment (yet) and that's why a referral is of no use. X
Neffie josparks
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Neffie
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Neffie
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josparks Neffie
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Lol I do the same Neffie!! Yes I'm avoiding ibuprofen now. There's other ways I can relieve any knee pain after my long run. I already lead a healthy lifestyle so I guess I just need to continue and hope I remain at stage 3 x
elizabeth63848 josparks
Posted
Hi there
I am now being referred to the Renal Clinic and my EGFR was 46 I was advised today. (37 last week). In the government NICE guidelines it states that a person who loses 25% function in 6 months should be referred and people egfr of 30 and below. So you should definitely get referred?! Tell GP you have read the guidelines. I had a major kidney operation in 1996 and kept well since then... Until the anti-inflammatories when I lost 31% in 6 months. Reassuring it's gone up in 8 days after stopping tablets. Feel very exhausted and I'll but I am breathless very often and waiting for a respiratory appt... Never ending. Hope you get a referral ASAP. Xx
josparks elizabeth63848
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Hi Elizabeth. I've given up hope of a referral. Because they consider me to only just be in stage 3 I don't think it's seen as necessary for a consultant to see me. Maybe if I had other health issues it would be different but I'm fine and healthy. I'm guessing at my 6 monthly reviews of urine, egfr and blood pressure they will assess any change. I wanted investigations as to why I've developed it but seems I ain't going to get it. And the more I think about it the more I wonder what I'd do with the knowledge. So maybe best I just live my life and hope the reviews keep me at stage 3. Glad you're well 😀
elizabeth63848 josparks
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Take good care x
susan16648 elizabeth63848
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I'm getting mixed up on my responding please forgive. You had 20 years of stage 3 that is great. Did you make any changes to your diet? My nephrologist thinks I have been the same for about 5-6 years now.
elizabeth63848 susan16648
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Hi Susan
No I didn't do anything to keep the good function.. in fact , I have eaten very healthily at all. I did have pre-eclampsia with both children and high blood pressure since then and now ?? Underactive thyroid and asthma in the he last year so maybe my luck is running out lol!! I have been breathless off and on for 18 months but not heart. In a few weeks I will get re-tested for thyroid. That's great your function has remained stable for a good number of years. Some people can spend their whole life without deteriorating I have read. Until recent breathlessness I have kept very well. Take care Elizabeth xx
sonia68053 josparks
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I empathise with you. Told GFR was 30 15 years ago (aged 60). Not referred to nephrologist until GFR below 25.(4 years ago) Nephrologist just said to check function every 6 nmonths. No advice, no action. No idea why - no predisposing factors, healthy lifestyle & diet. (Ex nurse - know it all!) Left in limbo and psychological panic. Told that it would not help to do biopsy. Echo showed shrinkage of kidneys.
2 years ago - heart attack - by-pass surgery. Found aneurisms x2, damaged pulmonary valve; 6 nmonths later GFR 11, started dialysis. Still don't know why any of it occurred. Good care from nephrology clinic - 3 monthly checks. Still no answers.
This site is the only place to get support that I have found..
josparks sonia68053
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hi sonia hope you are well and thanks for your message. i dont know where my head is at and not sure if i feel better or worse reading how there are so many similar stories. i just dont get why ckd is looked for in midlife checks and then they diagnose it and psychologically mess you up by saying oh well - when it gets bad, we will deal with you then. i wish i never went for the check, id be better off not knowing as i dont eat high salt diet or take ibuprofen often which are the only two things mentioned to me! x
claudia49033 josparks
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Josparks, im also a very healthy eater and live a healthy lifestyle. When I wa stole of my ckd a few months ago at age 40, I also felt helpless and frustrated. However I decided to take matters into my own hands and start seeing a nutritionist. Ironically he had more I for than the dr. There are lots of healthy foods that are not good choices for cdk. For some reasons Drs just won't look at the holistic factors. In addition I started seeing an acupuncturists. Now I no longer feel helpless. I am being proactive and doing something to help myself. My nutritionist had kidney failure and a kidney transplant, he knows first hand.
It's not just about low sodium, you also need to watch potassium and phosphorous. Which are in lots of healthy foods. Anyway, I'm here for you if you need an ear.
susan16648 sonia68053
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