Reassurance: I have been reading the... - Early CKD Support

Early CKD Support

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Reassurance

lwiltshire1157 profile image
10 Replies

I have been reading the Threads with interest, I have made myself ill with Worry when told I have ckd, my doctor Told me to Carry on With my life With a few Adjustments ie diet, just finding it so hard.

Linny x

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lwiltshire1157 profile image
lwiltshire1157
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10 Replies
phillen profile image
phillen

thats good advice from your doctor try to do just that sometimes things are stable for years

sometimes things suddenly get worse my husband lived with gradual kidney failure for about 40 years before he needed dialysis when it did come around he went very quickly on to dialysis but before that he had been in stage 2 for about 20 years 3 in & out for 10 & 3 to 4 for about 10 years so it was a slow progression, it's not the same for everyone i know but it just proves you never know so take the good advice & don't make things worse by worrying!

good luck

chelseagirl profile image
chelseagirl

Hi I agree with phillen. I have had a transplant for 22 years and was on dialysis for just over a year. Previous to that it had taken 20 years from my original diagnosis to get to the stage of needing dialysis. There is a lot of advice out there re renal diets and it can be overwelming. Take on board the information you can, and make adjustments to your diet where necessary, but don't let it rule your life completely. Good luck and good health x

GrannyChris profile image
GrannyChris

I can only agree with everyone's posts. I think that there should be more backup for people with newly diagnosed kidney failure, there are so many questions and worries, and yet we are told to 'go away and don't worry'. We have symptoms that we have been told are not relevant, we try to adjust our diets, but have no one to ask. The NKF do a marvellous job, but we need something locally, someone who has time for us, not the overloaded GP.

Sorry Linny, just having a rant. The NKF recommended book 'Kidney Failure Explained' is very good, by Dr Andy Stein and Janet Wilde RGN. You may be able to get it second hand on Amazon. Best wishes to you xx

lwiltshire1157 profile image
lwiltshire1157

Thanks guys For Your Messages.

At This Moment I Am Freaking out,feeling Very Stressed, not doing my Blood pressure which is high any Good.

Was Only Told Tuesday From a routine blood test....been told. they want to do another One On Wednesday Not sure why.........I just wish I could stop Shaking,

Nurse said I have nothing to worry About she Said Its common for someone my age (64) until now did not feel it..... always been very active.

Chat soon when I feel more calmer.x

PS: No urine samples have been taken yet, which I thought they would have done?

dizzydi profile image
dizzydi

Hello there

I was the same when I was first diagnosed in Feb of this year at stage 3 CKD. But have calmed down now. I also suffer high BP and now have it well under control. I am 44 years old. Try taking some deep breaths it does help ;-) Have your GP referred you to a Nephrologist (kidney specialist yet)? I am from South Wales (UK). x

lwiltshire1157 profile image
lwiltshire1157

How did you Manage To Get your BP level down, I enjoy Wine and feel all my little enjoyments in life will have to go, Sorry Just Very Low.x

Kristie profile image
Kristie

I am 45 years old and was doing great once I was diagnosed Stage 3. Getting my BP under control helped. I don't use a lot of salt anyway so cutting back was no big deal for me. Many people stay at stage 3 for years with no problems. I have progressed to stage 4 but there are other complications that caused that. Try to relax and know you are not alone.

elainemarie profile image
elainemarie

I was diagnosed a month ago with Stage 3. I am just about calming down now about it but I have also been told that I have an enlarged spleen and have to see a Consultant Haematologist. Does anyone know if this is connected to ckd? I was told about it at the same time as diagnosed with ckd but was too flustered to ask the Dr questions about the spleen.

elainemarie profile image
elainemarie

p.s. I go the letter in about Consultant Haematologist about a week after diagnosis but not till 10 month

Jjlinden profile image
Jjlinden

I feel the GP is just ticking a box in telling you you have CKD. Like everyone else I was told to just carry on as normal diet wise and that I could carry on taking over the counter meds. I think more effort should be made in finding out what caused it for each individual as there are so many causes. I don't have high blood pressure or diabetes, I don't smoke and I've always had a healthy diet. It was only after reading the threads on this extremely useful forum that I discovered that frequent use of NSAIDs can do it, and that struck a chord with me as I have had surgeries and accidents which required lots of them. All fully endorsed by the GP! Not one word was said about the possibility of this happening. It seems to me to be a silent epidemic....

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