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Early CKD Support
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Worried worrying again.

Hi me again, I cant help but keep looking on internet for some kind of answers. all sorts of things are going through my mind every waking hour I am thinking about this disease its taking over my life.I keep asking myself why I have got this? I expect everyone asks the same?I haven't got Diebetes or high blood pressure my urine came back normal.I'm worried that if I eat the wrong thing its going to effect my kidney function so I am getting obsessed with food.You read so many conflicting things like don't eat this don't eat that even certain fruits. I'm 55 with a gfr of 58 is that really bad?I'm now drinking at least 2 litres of water a day taking exercise and have sent for a vegetarian cookbook so I can eat mainly veggie meals during the week and maybe a little red meat on a weekend. I just don't know which way to turn gp no good just keep saying they aren't worried at this stage.Well IAM.Sorry to go on but I just needed to get thngs off my chest.I am white female from the uk.

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If you didn't read my earlier posts, one of the best investments I made was to have a session with a renal nutritionist. I'm 85 with a GFR around 58. The nutritionist told me I don't have to be as strict with diet as I was after reading many kidney diet books. For me, it was valuable to have information geared to my specific needs. Your plan of  referring to a vegetarian cookbook so you can eat mainly veggie meals during the week and maybe a little red meat on a weekend, sounds good to me.

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Thank you. I am going to give it a go anyway I've never eaten veggie food before so need to know what I'm doing.I am so confused over the food thing Doctor has told me to cut down on fatty foods and salt don't eat processed food cus they're high in salt.And drink plenty of water to keep hydrated. To be honest now I think of it lack of fluids may be wha has caused the problem I didn't used to drink a lot I would have a cup of tea in the morning one at lunchtime then one about 8 o clock at night and that would be my fluid intake for the day so probably did no good.

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Try not to blame yourself. I never drank much water either, but I don't know whether it caused my kidney disease. As far as I know, tea is a diuretic, and goes through the body without hydrating very much. Will be interested to hear from others about this. The renal nutritionist told me the same thing your doctor did, about avoiding all forms of salt. When I was a child, I didn't drink enough water, so my doctor told my mother, stupidly, to give me pretzels and other salty food to make me thirsty. I developed a craving for salt, which wasn't good for me. All the kidney diet books say it's OK to season food with pepper.

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Hi Janesmarty, don't worry to much honestly,  I am at stage 4, I am 73 years old and have eGFR of between 25 and 28% and I'm still being told not to worry yet, I don't think much notice gets taken until you are stage 5 and I think at about 15%. I was just told to eat sensibly. If I was you I would insist that your Dr. sends you to a nephrologist to get proper advice, I have found most GPs don't have enough knowledge about kidney disease, you need specialist advice.  I have also found a lot of comfort and help by joining a group of other ladies also with kidney disease, we are all at different stages a lot like us just starting out on this confusing journey and others who have done it all had a transplant, some more than once. They are all willing to explain the different stages and different types of treatment etc. I really recommend it, as I know it has helped me understand a lot, the group is called Women's Renal Failure Support Group, it is a closed group which means no one else can see what we chat about  as for some ladies it can be embarrassing etc. to chat on a site where men or in some cases other family members can see, so you would have to apply to join, if you look on the site heading it explains everything properly . I hope it will help you, Jill  

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I was told by my GP that stress is bad for people with kidney disease. Haven't unlocked the secret of how not to get stressed but trying to relax more and started doing yoga. 

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I'm doing Zumba twice a week and see my grandson most days that usually gets rid of the stress.

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GFR is only just into stage 3 if it had been 60 it would be considered normal so not much to worry about really. Always good to drink plenty, eat a healthy diet and exercise as this should keep you healthy long term. Try not too worry as stress is bad for your health too. Not sure your doctor would say you have CKD with a result like that will probably just monitor your kidney function every 6 months or so. Hope this helps to set your mind at rest. 

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Hi Helenjoan, yes I am being monitored every 6 mths. Got to go back in September.My GFR was 62 in 2010 apparently and nothing was said to me.The Doctor thinks I may have always had a slightly low Kidney Function. I'm wondering if having underactive thyroid and being on Levothyroxine since 2007 may have made things worse.

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Also kidney function can vary so it's possible your next test your GFR could be over 60 so your Gp is right to tell you not too worry at this stage but make sure you get your kidney function tested every 6 months or so as if kidney function was too decrease quickly which is unlikely as you are generally healthy no diabetes etc you could then be referred to a kidney specialist. Again try not too worry 

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Thn k you Helenjoan. I know I shouldn't worry but I always do and always have worried about everything. something I need to stop doing.Its just such a shock to be told out of the blue that you have ckd.given a leatlet explaining what it is and what to do told to come back evey 6 mths for blood tests.Then sent home. No explanation or anythingI am being sent for an ultra sound scan though after I went back to dr. upset and stressed but she did say that was for my peace of mind and didn't expect them to find anything..

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Hi Janesmarty.   Please do not panic yourself, you are in the exact same position as I was 18 months ago (and the same age and EGFR).  Mine was discovered via a blood test for another problem and then got slapped with "by the way, I think you should see a nephrologist as your kidney function is not what it should be..."  Like you I have no other 'conditions' that are associated with kidney disease, have always drank lots of water and have never added salt to anything but mine were damaged by my longterm use of NSAIDS caused by degenerative discs in my back and neck amongst other things.   TBH I now know that this was only brought to my attention due to me having private health through my job, as the NHS wouldn't even have mentioned anything being wrong with my kidneys to the point where my GP has even arranged for me to see a nephrologist at The Royal London Hospital for a second opinion !!

Seriously though, like others have said, stop worrying.  If you haven't been told to see a renal dietician or to drastically change your diet then don't.  If you do use salt, cut it down or out of your diet completely, drink 2 litres of water a day and try to limit the amount of red meat to 1 or 2 days per week and up the amount of fruit and veg. Basically eat a healthy and balanced diet.  

My initial EGFR was 56, then went up to 58 and for the last 6 months was "greater than 60" (NHS speak for nothing wrong) but I am glad I am getting a second opinion and to see someone else as I have a load of questions to ask.

I downloaded some kidney diet type books and tbh the recipes weren't a great deal different to the usual.  I did find the DAVITA website of great help though so that may be a starting point if you haven't already discovered it.

So, in essence, relax, stop worrying and consider your news as a positive in that you (like me and the rest of us) are now aware that you just need to look after your kidneys unlike the 1 in 6 that are walking around and have no clue that their kidneys are damaged !

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Thank you. When first diagnosed my daughter said I should go private and get a second opinion but I haven't yet I was going to wait and see what the next blood test says if gone down then may consider seeing a private doctor.I will look at DAVITA thank you.

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Hello there, some great feedback from everyone on here. I am 47 with a GFR of 35egfr,  my cause is put down to Long Term high Blood pressure and as I suffered with many kidney and water infections when i was in my teens, I had Kidney Reflux. I am just told to keep myself hydrated and do not add salt to foods, and the less stress is best, as I was a worrier all the time when i first found out I have CKD in 2013. My GFR ranges from 35 to 38, so steady at the moment. Try not to worry, your gfr is looking good and remember this fluctuates all the time :D x

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Sounds like you're on the right track to me. Every little thing you do now makes a difference for your future. I'm stage 4 GFR 15, wish I would've done something sooner and I wouldn't be in this position now. Since changing my lifestyle I have brought GFR from 12 to 15. Lowered my creatinine!  Hard work and perseverance now can only help you in the long run and try not to obsess, you're in a good place😀

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Just wish the docs woul have told me back in 2010 when apparentely my GFR was 62 I could have done what I'm doing now then and maybe prevented it from getting to 58

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I know, I found out I had PKD in 2003 but I asked what I could do and they said nothing so I just forgot I had it til last November when I went to ER for diverticulitis and they reminded me. By then my GFR was 12! Now I'm at 15 and feeling good so I think you are in fantastic shape to turn things around!! And you can. Don't let them tell you otherwise!! Praying for you!!

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Hello Jane

I understand all your worries, don't feel bad,I was the same a year ago.

It sort of takes over, paranoid and obsessive, pretty awful.

I watched what I ate and drank more(water)! Exercised like a maniac.Read too much about kidney disease. 

Ended up with depression and anxiety.

Now I am more chilled out, refuse to get in such a dark place again. 

You will be ok,  don't bottle things up,this site is good. 

I may not have given you the answers your looking for, I don't know them either.

Take care

Dawn ♥

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Thanks Dawn, Glad you've come out of the dark place. I refuse to go there I'm trying not to let myself get that far.I've had anxiety before and its not nice.Hope you stay well.

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Thanks for all your replys feeling better today. I have decided that i'm just going to stay as healthy as I can carry on drinking water and I drink Green Tea.Exercise as I'm doing Swimming 3 times a week Zumba twice and walking as often as I can.Cut out salt as much as possible and red meat. Then just see what happens in September when I go for my next blood and urine test. That's all I can do.

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I drink nettle tea twice a day. I really like it and it's good for kidneys!!

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Dear Madam,  According to my studies from Internet, There are 56 types of kidney problems. The proper number of eGFR depends on a variety of factors such as age, height, weight, life-style and even the geographical place where a person leaves. Any way, I think speaking of kidney problems, proper diet and life-style will help a lot. I wish you a very healthy and happy life.

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hi i too have stage 3/4 ckd.. ive had anxiety attacks not too long ago, just last 2 months. had chest pains , difficulty of breathing , even had nightmares due to excessive worrying. so i dont think worrying can benefit us. but i believe everyone here who have been diagnosed with ckd had really gone thru the process.. right now ive tried my best to be more positive. i had eliminated salt, meat, poultry on my diet however im still eating fish and eggs, along with fruits and veggies. i am also limiting dairy intake. i exercise most days as well. i also am trying to take apple cider vinegar 1st thing in the morning and herbal teas before i go to bed. my doctor also prescribed sodium bicarb wich i take 2 times a day before meals, lunch & dinner. i still dont know if it has improved my condtion as i was adviced to go back june for another blood works. also dont forget to pray. Prayers is the most powerful thing to do. hope this helps. Godbless us all

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I think its because we are not given much information by the gp about this because there isn't a lot they can do until it get to the end stage. I was just given a leaflet by my gp and told to cut down on salt don't eat processed food minimum red meat and keep an eye on my blood pressure which is fine so far. Think its reading the leaflet which scared me particularly the bit about people with ckd are 20 times more likely to dye of stroke or heart attack that scared me. Then you go and see a smiling doctor who tells you noting to worry about they aren't worried.Just come back in 6 months for another blood test and bring urine sample she said still smiling.Think there should be some kind of councilling for ckd when first diagnosed.Cutting out salt is hard as it is in everything.

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At 50 ish you have nothing at all to worry about, start being concerned when its 30 or less.....eating salads is always a good idea, and so is loosing weight, being the correct weight is so important, you should not eat tomatoes or apples...too much acid !! do regular excercise, like gardening or walking, and you will be fine

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janesmarty

Hi I just want to say initially I did the same thing you are doing. However, I came to the realization I just have to live! If you get a chance read my post. I recommend you do what I did be thankful for the good in your life and live each day to the fullest!! I know that there is only so much I can do and the rest is out of my hands! Love yourself and take care!! Best wishes❤️ Chic6392

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Hi...A GFR of 58 is nothing to worry about, mine is around 29, and I am 75, and poses no problems.....a GFR of 15 is when things become serious, and you are a long way from that, its always good to know how many points you loose a year, veggie meals cant do any harm, better than eating a whoole lot of red meat...you should eat no processed food, no bananas and no tomatoes.....take Vitamin D3, I am trying a THC based Cannabis oil, but really will not know the result of that for a year. My specialist put me on a beta blocker and a cholestol lowering drug, although mine was already quite low, around 3.8, but its preventative medicine. Keep happy.

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Hi, l,m in the same boat ,you have written everything l feel and think, l am like you no high B/P or diabetes but l do have under active thyroid asthma under control,vitiligo which l think is quite enough to be going on with ....

Like you l,m going to eat mainly a vegetarian diet drink more water etc l am 69 years old , l feel very worried too, my GFR is 59 creatinine87 ferritin 86 among the many bloods they took, but l am going to make another Gp appt as l have no idea what to expect , l know how you feel l hope we get some answers, l went to see my go because l had a rash all over which he diagnosed urticaria l have been on anti histamine For six weeks had blood tests so was shocked when l read them , then l read that rashes are a symptom of kidney , hope you find some answers, regards ,E 😢

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