Ckd prognosis

[Bluejean2]

Question why does so much info on the internet claim ckd will always worsen. I was diagnosed 5 years ago with a gfr of 50, since then my numbers have been no lower than 50 up to 60. My blood pressure and glucose are well controlled. There just seems to be too much negativity out there.

[rabbit01]

What I would say is that once the level gets much below where you now are then it tends to continue to decline. The remaining kidney function has to cope with more work than it was designed to do and this leads to more loss resulting in a vicious circle eventually with the kidney function being too low to keep us healthy. Best of luck to you for keeping stable but don't take your eye of the ball as once the slide starts there is no stopping it. I was not diagnosed till I was 17% and didn't have high blood pressure or diabetes. I am currently at 8%.

[Zazzel in reply to rabbit01]

I've been keeping you in my thoughts and prayer Rabbit01!

[Bluejean2 in reply to rabbit01]

Are you on dialysis? I have read that many people with severe loss of kidney function do not even know they have Ckd.

[rabbit01 in reply to Bluejean2]

No not yet but will be soon. I had no idea I had kidney problems. I went for a cholesterol check and they said your cholesterol is fine but you only have 17% kidney.

[ReidB in reply to rabbit01]

Rabbit01, did you ever find out what caused your kidney disease?

[rabbit01 in reply to ReidB]

I had a really bad chest infection in October 2014 and was given a high dose of an antibiotic called amoxicillin 3 times each day. My chest infection cleared but I began to feel really sick and could not eat anything. I also started to get a metallic taste in my mouth and then my urine was foamy. I stopped taking the antibiotic and a few days went past and I felt fine although I never lost the foamy wee or the metallic taste. Shortly after I had a blood test and that is when the said I had 17% kidney function left. In my opinion is was either a reaction to the antibiotic or I had an immune system response most probably IGAN. My doctor said she could prove it with a biopsy but advised against it as my kidneys were already so damaged and she said I could have a huge bleed. In any case whatever it was the damage was done. I was 48 years old and had a great job and a good income and I have lost everything through this disease. My company were really good and I carried on working full time till I got to 12% and then I was feeling so awful I had to give up work.

[ReidB in reply to rabbit01]

Do you know what your kidney function was prior to getting the chest infection?

[rabbit01 in reply to ReidB]

Yes 100%

[ReidB in reply to rabbit01]

Oh no, so your kidneys were healthy prior to that then?

[rabbit01 in reply to ReidB]

Yes, no problems at all. There is no history of kidney problems in any of my family. Just my typical bad luck.

[ReidB in reply to rabbit01]

I'm so sorry to hear this, I had no idea that something like this could do so much damage to your kidneys, thanks for sharing and I wish you the best. I'm 47 and at stage 2 and my doctor and I both have no idea what's causing my kidney problems. I dont have high blood pressure or diabetes and no history of kidney problems in any of my family. I've been at stage 2 for 4 years now and I pray I can stay there.

[rabbit01 in reply to ReidB]

I hope you can. I think you should be fine and your kidneys will outlast you! Just look after yourself and all will be well.

[ReidB in reply to rabbit01]

Thank you, wish you all the best

[Rkgaither1954]

You’re lucky!!! Be thankful! Just hope you stay at that level, cause once it gets out of control, you’ll feel all of the bad side affects of CKD. I know! I was diagnosed 6 years ago. My GFR has been declining since then from 59, to now 44. I know too well the feelings of each step of decline. This year has been my worst. The toxins, (waste products) in your blood that do not get filtered by your kidneys, eventually will cause all of your organs to start to fail. Your body can not function in a toxic environment. This year, there has been a lot of nerve damage done, causing my hands, legs, feet to loose feeling, be cold, have muscle twitching and cramps. I can not sleep anymore. Ringing in my head is so loud it’s driving me crazy. Constant pressure in my head. Pressure in my chest, my heart beating very irregular and heavy. I’m not the same person anymore, Just this year! I’m being referred to a psychiatrist because I can’t handle what’s going on with my rapid decline in my kidney function. It’s not my world anymore. I have no happiness. Only pain, depression and extreme fatigue.

So, just enjoy your stability while you can. There is no cure for kidney disease. Only dialysis or a transplant. And by the way, “kidney specialists” do not help you. They don’t know what to do. Only how to plug you into a machine when you get to kidney failure. It’s all up to you to figure out what you should do to take care of your kidneys. Good luck!!

[Mahgww in reply to Rkgaither1954]

Hi there, I think I have CKD. My current edge is 55 and creatine is 101. Have felt off for a couple of years, but it coincided with going through the menopause, so just felt it was that. My doctor won’t say I definitely have it until I have more blood tests done next month, though the trajectory from when I had them done last 8 years ago when my edge was 63, seems to suggest that it is.

Have looked online and have you seen Natural Kidney Journey? They have changed their diets basically to vegan, though there is some tweaking and they are getting great results.

I still have to go through some blood pressure monitoring next month to see if that is what might be causing it, but I think I might try this. What have I got to lose?

[rabbit01 in reply to Rkgaither1954]

Totally agree with your comment about kidney specialists. They are a complete waste of time well certainly that has been my experience. I never got any treatment or anything to even try to slow down the progression. All they are interested in is getting me on dialysis.

[Marvin8 in reply to rabbit01]

That's where the money is.

[rabbit01 in reply to Marvin8]

You are right there.

[Marvin8 in reply to rabbit01]

It should be totally illegal for them to own even a small portion of a dialysis clinic.

[Linmari in reply to Rkgaither1954]

. My family dr. noted slight decline in function over 15 years ago. Decline was slow, but eventually referred to Mayo for pre- emptive transplant eval. I got the call when GFR was 9. i never had dialysis .

i saw a nephrologist occasionally over the years. When i was evaluated they said my family dr. had done well, with medications and monitoring. They would have done nothing different.

So don' discount what a good primary care dr. and/or nephrologist can do for you. There is a lot of false information on the web. It is not the way to manage a serious disease.

Deceased donor transplant three yrs ago. "perfect match" gfr up to about 60.

[lowraind]

Probably because there is a lot of ignorance out there, including some members of the medical community.

[KatieRL]

I think this just goes to show how different we all are when it comes to CKD. Of course you are only as good as your last set of blood results, however these do change over time, but if you are taking your meds and everything is well controlled then that's great. I consider myself lucky, after 3yrs I was diagnosed with Lupus (SLE) at age 27 and didn't get to the dialysis stage until I was 48 and at 49 received the gift of life. My renal doctors fought very hard to keep my Lupus (SLE) and CKD at bay and I think they did a fantastic job. I always try to be positive about my experience but unfortunately not everyone can be that fortunate. CKD is really an awful disease and like many others I have also suffered from extreme anxiety and depression - it's at those times, groups like this, the Lupus Group and Kidney Care UK (on Facebook) have come to my rescue. I'm so grateful for them and if we are in a fortunate position, we should be there to support others. People rarely post when they are feeling OK, maybe that's why the posts you read are downbeat.

[Cdn52runner in reply to KatieRL]

I would just add my two cents. I was diagnosed about 5 years ago. GFR of 60 at that time. Progression only started about two years ago. Latest GFR was 40. I still feel fine physically. No symptoms that I could report so far. I would recommend Lee Hull's book "Stopping Kidney Disease". It is really about about the science of eating and how your diet affects your kidneys.

[Marvin8 in reply to Cdn52runner]

I would say to take Lee Hull's book with a truckload of salt, but we're supposed to avoid salt whenever possible. He's mostly just trying to sell his Albutrix amino acids.

[Bluejean2 in reply to KatieRL]

Good point.

[RickHow]

Kidney function declines slowly with age. That is for all people on the planet. It does not mean it reaches terminal stage, it just means deterioration, like all parts of the body. Now comes CKD. This crazy classification system called eGFR which does NOT take into account why your Creatinine levels are what they are, it just talks of "typical/normal" people. A person (which is sounds like you are one) is labelled with CKD lets say because of diabetes or high bp which affected the kidney. Another person has none of these influences but has "ckd" because their kidney(s) are failing. BOTH with suffer decline over the years. Obviously the one who had bad kidney will worsen at a more rapid rate not just due to normal decline, but because of true kidney disease. Your kidney function (if you controlled the cause) will worsen (due to age) more normally over your lifetime.

[Bluejean2 in reply to RickHow]

Yes my doctor says with good control of blood pressure and glucose as well as taking an ace inhibitor in my case lisinipril it is highly unlikely I will ever need dialysis, I am 64.

[orangecity41 in reply to RickHow]

I am 78 and diagnosed at level 3b. I agree with statement about eGFR (it can vary). Even with renal diet I still have high range potassium, phosphorus, sodium. Could only imagine how would be without diagnosis and prescribed diet.

[Bluejean2]

My doctor says with proper control of blood pressure and glucose the disease can slowed to an extent that it is highly unlikely I would ever need dialysis, I am 64.

[devilishdawn]

I was diagnosed with CKD stage 3 back in 2005 and had no idea I had kidney failure. My body was very itchy and I had a bad cough. Overnight I gained one a half stone and my legs and body ballooned like the Mitchelin man. I went to my GP, was sent for an X-ray and was told to ring my GP back in two days. He said my heart was enlarged, I had fluid in my lungs and to pick a prescription for diuretics. I was still bad and a few days later ended up in hospital. My blood pressure was 254/154 mmHg and I was kept in hospital to get rid of all the fluid. This is when I was finally diagnosed. My right kidney was completely dead and my left one had started packing up. There is only about 35% function left. I got lots of books out of the library, read everything I could about kidney failure and now watch what I eat. My kidney function was about 44 back in 2005 but has now dropped to 34. In 2006 I was diagnosed with Type II diabetes and was put on insulin in 2008. My kidney numbers do fluctuate a bit but as long as it does not drop below 30 I should be okay. Fingers crossed.

[Bluejean11]

Wish you the best

[citronc3]

Exactly there is a lot of negativity out there. I hope to see more positive posts. I am aware that there are people whose condition no matter what does advance to a dangerous state but there are also many people who stabilise with good care and diet. Some CKD conditions are because of a history of kidney stones causing physical damage, and that stage diagnosed may never change and may even improve.

[newbie56]

Bluejean2,

I appreciate your positive message. Loss of hope would be miserable

and more damaging.

I'm 79 & was diagnosed with stage 3 ckd 3 yrs ago. I was shocked.

(No doubt because of a long history of high blood pressure & stress)

Was 25 lbs overweight. So, i began to watch my diet & lost 30 in 2 months.

Too fast, I'm sure...at my age it doesn't look or feel the way 120 lbs looked

50 yrs ago.

Anyway, my labs are stable & 'neph' says i'm doing great. On 5mg Amlodipine

5mg Lisinopril, & 6.25 Coreg which is more than i ever thought i'd take...but i realize most folks my age need a lot more.

Only vitamin recommended for me is D3, but i've added B-complex & fish oil.

I'm slightly anemic so i try to eat iron rich food (but no red meat) Very little dairy but carbs are hard to resist. Veggies are fine but I cheat...

The Natural Kidney Journey (many are giving glowing reports of it restoring

kidney function) is way too restrictive for me. But i may be forced to

Thanks again Bluejean2 for happy thoughts.

[Runquik123]

Hi Bluejean 2

I would recommend you join the British Kidney Foundation. They have regular magazines and advice leaflets which are very helpful. My GFR is now down to 13, and have been contacted by a renal nurse who is going to visit me at home to discuss my future plans. I'm lucky enough to have living doners and this meeting will give then some helpful advice