New CKD Diagnosis....age 43

[eastham1153]

Hi, I have recently been diagnosed with CKD Stage 3. I am 43 with 3 children 21, 17 and 10. The damage to my kidneys has come about as a result of taking Naproxen and Ibruprofen for approx 2 years for a spinal complaint. I stopped all medication following a successful spinal fusion in June 2012, I havent taken ANY medication since Sep 12. I have established that In June 2012 my GFR was 84, 12 months later it was 61 and today it is 51. Therefore it has reduced 33% in two years without medication. I am anxious now that this decline will continue and I will move into Stage 4 and potentially a dialysis or transplant patient. I should also add that I am approx 7 stone overweight but working on this now, successfully following the diagnosis. Can anyone advise if they have a similar "youngish" diagnosis and how do they cope with the prospect of dialysis/transplant and what are peoples experiences of CKD reduction into stage 4/5 when it has reduced at this rate over last 2 years? Does a good diet help and if so...what does a good diet look like? Thanks

[Nutbrownhare]

Hi

I am the same age and my kidney function is 53. I have different causes for my kidney function, but it have been told that over time my function will reduce further.

The positive is that kidney function can sometimes fluctuate, mine have over time. Also it may not drop at the same rate. It could be that your kidneys have needed some time.

So always try to stay positive and there is still some way to go yet before dialysis

But in the meantime, follow a non- processed food diet and watch your intake of salt. Certain foods can be bad for you, like tinned foods. Other foods are better, such as fish. Also watch non sugar drinks, as the chemicals are worse.

There is a web site davita I think it is called, I'm sure that someone will put the link on for you. That has lots of helpful dietary advice.

Lastly avoid stress, not good for kidneys. Hope this helps you.

[eastham1153 in reply to Nutbrownhare]

Thank you very much for your response, its really appreciated. I understand the non-processed food diet and intake of salt but not the non-sugar drinks, i assume you meet diet/no sugar varieties (diet coke/lemonade and sugar free cordial etc)?? I drink a lot of this type of drink, mainly to prevent over eating and to help with weight reduction. I wasnt aware that they could be harmful. Id really appreciate more information around this if you can send me in the direction of any good literature id be grateful!. I have just received an email from Davita - there seems to be a wealth of information on this site, so thanks for pointing me in that diretion. Your point about stress.....common sense but very difficult at this point.....im very anxious at the moment and trying to read anything I can to educate me....but im not sure if this is making the situation worse! Is this normal? How long does it take from diagnosis to "coming to terms with this" and moving on so its not at the forefront of your mind?

[Nutbrownhare in reply to eastham1153]

Hi

I know if you are trying to lose weight sugar free drinks seem the natural option. However, I think that if it's recommended to eat non-processed food, it would be better avoiding sweeteners. The more natural the food probably the better it is. Some advocate organic foods as well, as these have less traces of pesticides and antibiotics.

I tend to drink water, herbal teas and diluted elderflower cordial. This way I avoid the sweeteners, as well as coffee and ordinary tea. Though I must admit I allow myself a coffee in the morning, to kick start me before going to work.

I also like to take control of things and that is a good coping strategy for dealing with CKD. I have also over the years learned to listen to my body. Most of the things that aren't kidney friendly I actually don't like, with the odd exception.

If you need a friendly ear, this is definitely the place to come. So any queries or just to touch base with someone in a similar situation, just come on here.

Take care

[eastham1153 in reply to Nutbrownhare]

Thanks very much nutbrownhare for your response and good advice. Take care.

[googie]

Heya, was just going to say the same as Nutbrownhare really. A good diet does help and so does losing weight and doing some light exercise and please don't panic.

I was diagnosed at 23 with stage 2 and now, after a blockage and at the age of 46 I am at stage 4. The function can fluctuate. When I was first diagnosed I was down for immediate dialysis or transplant, and thanks to diet and them taking me off the tablets that caused it all in the first place, I went from 17% to 40%.

The christmas before last, after being poorly I went down to 17% again and got called in and talked to about what would happen if it got lower, and the promptly popped back up to around 25%!!

Take one day at a time and just look after yourself xxx

any worries, get back on here and talk, its the only way to stop yourself worrying xxx

[eastham1153 in reply to googie]

Hi, Thanks for taking the time to respond I really appreciate it. Nutbrownhare has some very good advise and I appreciate your point about loosing weight. I have managed to loose a stone since my diagnosis in August and im walking 30-60 minutes a day now. It suddenly doesnt seem as difficult with a medical reason as a cosmetic reason! Your fluctuations in kidney function are wide ranging....I have reduced by 6% this year already....Im pinning my hopes and prayers on loosing weight and becoming fitter on trying to maintain these figures, but also being realistic this may not work but will ultimately be better for me if i move into the dialysis/transplant arena! Your one day at a time strategy im sure is good advise....Im looking to get that in my head in the next few weeks ....Im panicked at present by the fear of having my life/long term plans disrupted and the prospect of not being in good health in the future. You results seem to suggest that good diet and positive mental attitude can have a good effect on your numbers....so I will take that advice and really try to get my head around this. May I ask if you sought any councelling when you were suddently faced with this diagnosis, especiallywhen you dropped to 17%?

Good luck and keep well. xx

[Steadyaway in reply to googie]

Hi, I was under the impression that the only way the gfr could go was down, except for slight fluctuations. Its good to hear that it does occasionally rise again.

I was discovered to have a gfr of 64 completely out of the blue. I know by reading other peoples stories I am probably more fortunate than others but it is still a worrying situation.

[AnnyD]

Don't worry, I spoke to my doctor just yesterday and he said the guidelines have been changed about when to even mention people's kidney function to them.i was told 9 years ago that I had a problem with my kidneys and that I was stage three and nothing has changed from then.I rarely eat red meat in fact just a little of any meat really. Keep hydrated and don't put too much weight on.some people live their lives with one kidney some do not even know.just be wise and take care of yourself.

[eastham1153 in reply to AnnyD]

Thank you AnnyD for your response. I plan to take very good care of myself. I just need to get my head around the diagnosis, im a bit of a control freak if im honest and ive not taken kindly to this potential disruption to my life in the future. Have you cut back on meat as a positive step because of the diagnosis or is this normal ....I eat white meat daily and red meat 1-2 times a week. I rarely eat processed foods.

[AnnyD]

I cut out eating so much meat when I found out about the CKD.I am shocked at how common this is,they advertise Ibruprofen etc so readily,without any warning that kidney damage can occur with prolonged use. I felt panicky when I was first told but since then other doctors have said that there is barely a problem and just watch your diet and hydration now you know,so that's all one can do it seems.

I really never eat red meat and you can google anything at all to see if it is kidney friendly, for instance any other drugs that you may take like vitamins or rub in pain easing creams.

[eastham1153 in reply to AnnyD]

Hi AnnyD, Thank you very much for your response. Yes it is shocking that the drugs are doled out without warning or monitoring in place! I do feel panicked by the diagnosis and the rate it has declined but I am slowly coming to terms with it and starting to make positive changes to my lifestyle! Thanks for the advice.

[AnnyD in reply to eastham1153]

Hello Eastham 1153 how are you? This sight is difficult to follow, the CKD discussions seem all over the place!

[googie]

I have seen one counsellor, but in all honesty it didnt help. I needed to talk to someone about having a stent fitted as I was getting into a right state (although I know its nothing to worry about now), but when I asked her about it, she didn't have a clue, as she had never seen one. The only thing you can do to help yourself at this moment in time, is doing exactly what you are doing now. Exercise, eat healthy and learn to listen to your body and look after yourself xx If you have worries ask someone on here, or your Renal consultant. Don't lose sleep over this , as it doesn't help (we know, we have been there xxx)

[eastham1153 in reply to googie]

Thanks Googie for the advice. I am making positive changes to my lifestyle and im hoping they will have an effect on my next blood work. I appreciate the good, common sense advice.

[Chin69]

Hi, I started feeling sick when I was 32 with migraines and found out that I was as 32% kidney function, once I was put on blood pressure pills I felt better, certain medication is better but the NHS will always give the cheapest one, which I was allergic to so I was given the more expensive one and the doctor accidentally told me this was the best one as it also protects the kidney we don't usually prescribe this! it's called Irbersartan. It has slowed down the kidney disease and combined with an extra low blood pressure medication (the type that makes you lose water) I feel very well. The doctors will tell you to reduce your salt intake but you should cut it out completely, that requires effort but it pays off big time. So cook all your own food, get use to experimenting with different herbs and spices. You should not worry too much about what you eat as it gets very restrictive when you are on dyalisis. I don't eat too much meat maybe 2 or 3 times a week, fish is easier for the body to digest or quorn. At your stage fruit and veg is still good. Also cut down alcohol to maybe a glass of wine or a beer a few days a week, it helps the kidney and the liver because these organs get rid of waste and our body doesn't need alcohol or the extra sugars. Keep up the exercise now that your spine is better, even walking every day counts. I'm 45 now thankfully my illness is slow and I'm at 23% now I actually went down to 20 but gained 3 so with hard work you can improve. Drink plenty water to flush away any toxins or salts, it's good to measure how much you drink maybe use a bottle or jug to make sure you do it. Sorry that this is long but I get a bit carried away. I hope you feel better.

[eastham1153 in reply to Chin69]

Thank you very much Chin69 - I appreciate the advice. Im not a daily drinker but I do like a bottle of wine on a Friday, I have tried to share this over the weekend now and never drink on a school night! I do wonder though if it will do a lot of harm if I have my wine bottle on a Friday and nothing more till the next weekend? Im becoming more positive about the diagnosis now.

[Chin69 in reply to eastham1153]

Do you mean a whole bottle of wine on the Friday or some of the bottle?

As a whole bottle at anytime would not be good, it's way too much for the kidneys to deal with. I don't mean to sound rude. I'm glad you are more positive it helps more than you think.

[skyrider]

It seems to me after reading a host of things that no one has the answers. Everyone is different and only you know how you are feeling. Each doctor is different one will tell you you should not have symptoms another may say yes. I find this type of forum to offer the best information. I believe what it comes down to is what life is a day at a time. I don't believe anyone can tell you what is going to happen with your numbers at any given time and to try and find out only leads to frustration. So you do the reasonable things that you can control, diet,exercise etc. Number change who knows months , years. I ask my wife last night do you think the kids will be upset if I am still alive in ten years it was more a fun comment than anything else. So in the end enjoy life as it is and do the best you can, and of course wait for the next test.

[lillyrae]

Hi I was diagnosed two and a half years ago started gfr at 59..went down to 54..now 53...so for 2 years not a dramatic change...since ive had this my diet has just changed im a big person and have lost just over 2 stone I started feeling unwell with a lot of foods.... now im just doing my own thing..... my body tells me what to eat its very strange as I loved plateful roast potatoes ..don't eat potatoes now well very rare....cut down on cheese ..ive noticed a lot of foods make me really tired...also my urine goes really frothy when im bad and very dark...since having this a year after I was diagnosed with pernicious anemia so now have a jab b12 every 3 months..also have osteoarthritis and ankolising spondolitis..and the tablets I was on called arcoxia gave me the problem so now not allowed any painrelief for the arthritis when I asked.... dr said its like you walkin in front of a car...I am waiting to see bone man now??...I don't over worry about it as you can stay with the reading for years.....I also have excema odema on pills for that..also high colestrol where the kidneys arnt functioning properly and the waste stays in the blood but I don't always take them ones....Try not to worry to much...and I wish you well..............