Only diagnosed in October with CKD after being a type 1 diabetic for nearly 20 years.GFR was 36, Jan 2013 dropped to 28, may2013 down to 18!

[louise1971]

They are telling me at the hospital there is nothing to worry about, I beg to differ this is my health you are messing with.!!! I have spent all day today looking for a English website about CKD and the diet best for me, it has taken 6 hours to find this site.

Can anyone help in what I should be cutting out, I have cut out processed foods from my diet and do not add salt to anything anymore. I am struggling now as level have dramatically dropped I feel I must be following some sort of diet, but again on different pages on here their are a lot of contrasting view points. I have decaff teabags but then am told no tea, or coffee, I eat a lot of dairy, love tomato based sauces and meals, but cant have them!!!!! Can someone either suggest a good web pages or book that will clearly tell me what I can or cant eat. I would appreciate any help you guys can help me with....having a major panic that I can't eat gluten or can I ????? Please Help xxx

[Viviola]

Hi. Too right you should be worried. Get yourself an appointment with a renal dietician who will be able to talk you through what you can and can't eat. With an eGFR of 18 you need to be aware of what your future holds and whether you need to start at least thinking about future treatment. I was at 18 in Aug 2011 - now at 14 and being worked up for a pre-emptive living donor transplant. Don't be fobbed off - keep asking questions and don't stop asking.

Best of luck. x

[louise1971 in reply to Viviola]

Thanks Vivola x

After phoning the hospital I am going to see the consultant on Tuesday they have decided I may need to reduce the Ramapril to 2.5mg from 5mg, only been taking them for 2 weeks!!! I did take them years ago because of the diabetes, but after 3 wks in intensive care they took me off everything!!!

The consultant hasn't even discussed the options open to me, I have a number of friends and family who would take the test to be a living donor, but no seems to want to discuss anything, as if we are 2nd grade citizens...I have had this type of ignorance for years over medical issues, well I have now had enough, I will keep asking questions although the consultant is happier talking about his wife than discussing my care, cos "I am doing brilliantly" so he says

Thanks again xxx

[louise1971 in reply to Viviola]

Hi Viviola,

Thanks for your reply, I have been on to the hospital all day and they have made me an appointment for Tuesday. I am concerned after all the consultants don't seem to answer any questions, I am no further forward than I was in the beginning! I have many friends who want to take the test and see if they could be a living donar, but again the doctors don't seem to want to know about it.

Has it been a long process for you? I do not want to end up on dialysis if I can be careful, at 41 I have too much life to live.

Lou xxx

[louise1971 in reply to Viviola]

aarrgh !!! I cant reply to Viviola, I have now tried 3 times to post a reply...if this goes through I will post a reply later x

[louise1971]

Hi Viviola,

Thanks for your reply, I have been on to the hospital all day and they have made me an appointment for Tuesday. I am concerned after all the consultants don't seem to answer any questions, I am no further forward than I was in the beginning! I have many friends who want to take the test and see if they could be a living donar, but again the doctors don't seem to want to know about it.

Has it been a long process for you? I do not want to end up on dialysis if I can be careful, at 41 I have too much life to live.

Lou xxx

[Viviola]

Hi Louise. We started tests August 2012. Luckily one of my brothers has proved to be a perfect match (same blood group, exact tissue match). Hopeful that we have now reached the end of testing and waiting for a follow up appointment to see surgeon and hoping to go to transplant later this year. My hospital want to try and do transplant before the need for dialysis arises. I think that if you get the right care and advise you can probably delay things for some time. I know from other posts on this site that many people have actually managed to improve their kidney function with proper dietary advise and close monitoring. I'm only 10 yrs older than you and am not ready to give up yet - certainly don't want to spent hours/days every week having dialysis!

[sukki]

Hi Louise I know how you feel, please don't despair. I have had a lot of help from the attached link on renal diet and I am feeling a lot better. I am Stage 3a and have had no help from my GPs as to diet or much else really. Try renaldiethq.com. Hope this helps. Take care x

[louise1971]

Thank you for helping my. I do feel a bit more positive today my hubbie keeps saying I should look on the bright side ate sat j will loose the weight I have been moaning about! I read on here I can have gluten free food so have brought the bread lactose free pupil dings and had sweet and sour chicken for tea it was lovely but bet I've brought the wrong stuff' I have to have bloods done again Tuesday! I am like a pin cushion if they aren't stabbing me for renal it's for diabetes lmao