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
claudia49033 josparks
Posted
Hi josparks,
Sorry to hear that, it is absolutely unacceptable that a specialist won't speak with you. i was recently diagnosed with stage 3 myself & what in finding is that many nephrologists seem to have that attitude. I was told to just "eat healthy" and wait for dialysis in about 15 years. When I asked her for a more specific diet, she said nothing I eat will change my outcome. It made me feel helpless. I called several other nephrologist a for a second opinion and was told they don't do second opinions.... I find that ridiculous.
My next step was to see a nutritionist, I found one who has been dealing with kidney disease his whole life, he put me on a special diet. I still feel scared and frustrated but at least I feel as if I'm being proactive.
I wish you the best and if you need any support I am here for you.
josparks claudia49033
Posted
claudia49033 josparks
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Where do you live? I'm in New Jersey and looking for resources in this part of the country. If I hear any info that might help you I will pass it along. Sending you healing thoughts.
josparks claudia49033
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Im in the UK - In staffordshire. Any info from anywhere wodul be helpful right now. Other than paying to see someone privately I have a sinking feeling I will just be left to get on and accept it
x
Neffie josparks
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josparks Neffie
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helen54849 josparks
Posted
Hi,
I have CKD stage 5 and am on dialysis and have my transplant in about 3 weeks. You must stop the ibuprofen now poorly kidneys don't like it. Keep your BP under control (it sounds like you have this just right) and don't change your diet unless you are specifically told to as it is danerous. If all your bloods are ok and change for example your intake of potassium you could make it go to low, you work for the NHS so you will know this can be as life threatening as high potassium. Same with phosphate. Stop the salt drinks kidneys don't like salt and they especially don't like lo salt so that should be avoided. I have had many diagnosis that keep changing so I am going with they haven't a clue but don't want to say that. I however by the sound of it have been well looked after so feel quite lucky. I like you had been at stage 3 for years, I was on the radar from when I was 13 and had I throat infection that was left to the point I peed blood and I stayed at stage 3 until early 2014 when it all went bad very quickly. Every September I got a cold that went into a chest infect and I lost loads off my GFR they wouldn't lsten to me even when I showed them the loss on a plotted map at the times of year but that is by the by. By Nov 14 I was 9% GFR and ready for dialysis 9 (They even tried to send me home without my dialysis catheter but I refused to go so they had to do it) and here I am today. You need to realise thats the GFR is only a guess and things can effect it like if you have a slight infection before you go for bloods or excerise if you do it before bloods. Sometimes it just happens but they should be able to find out why, the neph should see you as if there is nothing obvious with your bloods you may need a biopsy and this can provide a better picture as you may have a condition that would respond to steriods which would possibly slow down any decline. You may stay at the stage you are at now and it never change you don't know we are all different. I would keep asking and not leave it until you get answers and I mean propper answers insist if need be like I say they may with some investigatioin be able to diagnose and prevent further decline. Lastly don't be scared if and it is a massive if, you ever need dialysis its not so bad I am only 38 and do PD I have two kids work full time and run the family business it all gives me focus. Good luck and keep us posted x
josparks helen54849
Posted
Thanks for your reply Helen. I definitely will stop ibuprofen and the sports drinks, just need some advice on how to replace lost salts when I exercise (as I'm reluctant to stop as the benefits to a healthy weight and blood pressure are massive!) i will keep pursuing answers as I can't be fobbed off with no explanation it will drive me insane. My go thought the consultant would offer a biopsy so it will be interesting to hear what he says when I go in Tuesday. I will let you know the outcome. Hope you're feeling well at the moment, you sound like a very strong lady x
helen54849 josparks
Posted
Hi,
May be a dumb question but why the need for sports drinks what happens if you don't have them. I attend metafit 3 times a week and just drink water perhaps I am being a bit thick but I don't have any issues and I don't use the drinks in fact I would be of the opinion they are a bit of a fad like detox for example you know yourself this is rubbish and you can't detox using pills and funny drinks? Keep up the exercise yes but water is fine have a go and see what you think. I am at a loss why the neph wont see you especially as your GP though he would opt for biopsy. I would put the frighteners on the neph and ask for it in writing and his reasons just in case you need to seek further advice you will find if he has to put refusal in wrtiting he will change his mind for fear of possible reprocussions later on. You shouldn't have to do this but needs must. There will be more than one neph try asking to see a different one. If you have to have a biospy you will be fine its a day case (I have had two) doesn't hurt but you have to lay flat for a good few hours after it so they can make sure you don't have internal bleeding I would insist on one. I am feeling ok thank you, have finished work now so I don't get any nasty bugs which may stop my op but the flipside of this is I have a hyper 5 year old to amuse lol no rest for the wicked eh. Let me know how you get on tuesday x
josparks helen54849
Posted
Hiya. The consultant sent a standard letter to me saying due to unforseen circumstances the appt was cancelled and that I woudl not be offered another appt as he was referring me back to the GP. When I called my GP the receptionist said there was a letter back to the GP asking for him to 'explain my condition' - no resaon why he wouldnt see me though. Seeing the comments coming back I get the impression I am probably not considered in a dangerous enough position for them to see me as I am only just below 60 on the gfr score. I was advised my my gp at diagnosis to consider going on statins as I am now a high risk for heart disease - so its like thehy take the easy option and just pop a pill down you.
Regarding the sports drink. I run marathons and am quite a salty sweater! So a sports therapist I work with gave me some advise regarding sports nutrition (my specialism is on obesity management) - anyway he recommended some electrolyte tablets in my water when on the longer runs to replace the lost sodium, potassium and magnesium. Obviously tap water is what I use for gym or shorter runs but when I am out for a few hours it is a whole different story. The ibuprofen was just to resolve an ongoing knee prob I generally get after the longer run but I am happy to not have those. I just wanted advice re the electrolyte drink. A consultant would be better placed to advise as I have a feeling (frompast experience) my gp would answer with 'stop the long runs' !!!!
Good luck with the op and hyper 5 year old - our kids are 15, 12 and 9 so not quite so hyper anymore!! x
helen54849 josparks
Posted
Hi,
I see that makes it more easy to understand the whole running of marathon well done you!. Statins??? are you happy to take these. My cholesterol has always been fine as like you I have only home made food so I can see what is going in in, plus my kids wont eat anything from a packet which is a good thing. However in January I wasn't to good and the only thing I could stomach eating was brie and crackers so I had this most days for most of January. In April (not quite sure why there was a 4 month delay) I had a letter from my neph to say go to my GP for statins. I have seen stories about these on the news so conducted some research as I like to do before I take anything. I went to the GP and said I would like another blood test an up to date one to see how things are but was refused, no follow up was offered, no liver function test just the highest doze possible and told when you get the horrible side effects just stop taking them!. So the people who suffer the worst side effects are skinny women with kidney problems and the side effects are as serious as irriversable muscle damage. I struggle any way due to all the other things that go to kidney issues all over the place vit d and parathyroid, calcium etc so there was no way I was taking them and my bloods couldn't of been that bad cos they just said ok?. You are at CKD stage 3A and should be under a consultant even if it is just for 6 monthly review and bloods. Good luck next week x
susan16648 josparks
Posted
Hi are you in the USA? I was diagnosed last year with Stage 3 CKD. I was terrified. For about 5 years when I received my blood work my GFR would be slightly lower. It did not change much but my GP said I just needed to drink more water. Finally last year 2015 I started demanding answers. I got on the internet of course & started reading. My new GP sent me to a nephrologist. I have been taking blood pressure meds for at least 7 years or more I am 62 & they believe, but don't know for sure, that it was caused from high blood pressure. My neph tells me that I may never need dialysis & has told me he has many patients where GFR stays steady for years & years. It does not make me feel any more comfortable about my disease. I am on no special diet but was told no ibuprofen. Somedays I just forget about the disease & other times I really worry about it. I go to my neph every 3 months. I was in total shock when I found out I was in Stage 3 but after learning more I know people are so much worse off than I am & I pray that a cure will be found & more research needs to be done. I believe so many don't even know they have this disease.
josparks susan16648
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I'm in the UK. My blood pressure has always been around 114/78 so fine, only raised during pregnancy when it was 150/129 and I had pre-eclampsia. There are absolutely no reasons as to why I should have this so that's why I'm annoyed the consultant cancelled my outpatient appt. I do sit here thinking stage 3 no symptoms, why am I moaning. But I'm petrified of how this disease will develop. My lifestyle is so healthy I cannot change anything other than stop the occasional ibuprofen and salt replacement drinks (I literally only have these about 1x 6 weeks when I do a 15 mile run), so if I can't change anything I'm worried it's just developing in me and it will keep going. X
susan16648 josparks
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trollking josparks
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Hello Josparks, i too live in Staffordshire. You whole story is systematic with Kidney treatment. I have had kidney issues for years but more recently become more serious. I went to see the consultant with my friend and she asked about diet and my cosultant looked at me and just laughed and said im sure diet is not an issue. The thng is i go gym but he has no idea what i eat :-( anyway the comedy is that i am under one consultant for kidney stent and one my actual kidney specialist. One works out of Stoke the other out of New Cross Wolverhampon. the computer systems dont talk to each other and so gettting notes passed around is horrendous. Its like the right hand doesnt talk to the left. And the comment by Claudia I was told to just "eat healthy" and wait for dialysis in about 15 years just about sums it up. The bottom line is that unless your GFR is <20 no one is interested :-(
josparks trollking
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Thanks for your message - although it is disheartening to hear, it kind of confirms what I thought. Considering CKD is on the rise you woudl think there would be more urgency to understand the reasons why. Did you have any indicators before ckd was diagnosed? I think this is what baffles me the fact that I have absolutely none of the issues linked to why many people develop it. I was asked if I had eaten a high protein meal or exercised before my one blood test but I had not done either beforehand. I have also been told by my original GP to consider taking statins as I am now high risk for heart disease.....
trollking josparks
Posted
Your GFR can be effected by many factors and can change litterally from one day to the next. Apparently you are not supposed to eat red meat 24 prior to you blood test or lots of strengh training. Its all a bit smoke and mirrors to be hoest. My CKD goes way back i was born with a "bad" left kidney that wasnt picked up until i was 3 years old (although i cried continually for 3 years) the left kidny was removed but by then had screwed my right kidney. my GFR ranges between 18 and 35 depending on infections etc.
susan16648 trollking
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I was never told that! Maybe that's why mine is good (well stable) & then will drop at the next blood draw. I have charted it out & I know I focus too much on the number. Thanks for that info.
trollking susan16648
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