Help if problem

[Lyndon74]

Hi all I'm new here. I'm Lyndon I was born with one kidney and in the last year I've found out myself that I have stage 3a kidney disease I was only told that my kidney was only working 54 percent so I went online and looked myself to see what stage I was at so please can someone tell me how long have I got before I hit stage 5

[Bassetmommer]

HI Lyndon,

The answer to you question is NO. NO one can tell you how long or even if you will reach stage 5. But now is the time to set in place good eating habits and learning about kidney friendly diets. You can slow the progress by changing what you eat such as more plant based foods and less meat, especially red meat. Take the time to look up at the University of Google renal or kidney diet. There is a lot out there. Davita.com has a lot of information about kidney care including diet. You might want to see a renal dietician.

So in short, the answer is up to you.

davita.com/diet-nutrition/a...

[lowraind in reply to Bassetmommer]

One comment on University Google--yes, do your research, but be aware that there are also people out there selling their own plans and who may tell you things that are not always best for you. Do your research, see what the experts say, and then, make your own plan. Some resources:

National education, support and advocacy organizations:

• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.

• Renal Support Network provides many support and advocacy services including a phone support line.

• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

• National Kidney Foundation provides a portal for patients too.

[Frankie52]

Hi there is no time scale as far as I can make out. I have been at stage 4 for 10 years! I get no advice from the doctors so what I have found out is by going on line. try to eat healthy low salt and potassium and drink loads of water. Good luck.

[planetechy]

Hello Lyndon,

First off, stop thinking about stage 5 you could very well never reach there. Yes your fighting a uphill battle with only one kidney but you can still do a lot to slow down the damage and maybe even reverse it some. I started out with a GFR of 52 but now through a strict diet and lifestyle changes in three months my GFR went up to 74. First, take a hard look at your diet. Sodium, potassium and phosphorus need to be controlled and very limited. Second, make sure that your blood sugar and blood pressure are where they need to be. Third, make sure that you have a doctor who you trust and can talk to in detail about your condition and who will help you understand all your options on how to take control of your disease. Now back to your diet, this is your first line of defense against the progression of your CKD. There is tons of information and renal diet plans that you can access online or in any major book store or library. And don't forget support groups like this one and in your local community where you can talk to others that are going through the same experience as you. CKD is not a death sentence by any means and there is a lot that you can do to prevent it from taking over your life and consuming your thoughts and dreams but you must start now. Also you might consider talking to a nephrologist, a doctor that specializes in CKD and see what they might suggest. Everyone is different and their specific needs can vary. They might also want you to limit other things in your diet or prescribe you medication that you could benefit from. One thing that I did was to cut out all red meat and pork from my diet and limited my protein intake as well. I'm not saying that it will work for everyone but it has worked for me so far. I hope that I have given you a starting point and I pray that you are successful in your quest to understand and control your CKD. Please stay in touch with the group here and let us know how you are doing from time to time. You can get a lot of useful information and encouragement here and don't lose hope ever. With determination and support from your doctors, family and friends you will do just fine. God bless you and your family.

[wingsofadove]

Hi Lyndon,

Do not despair, not in any way.

I was born with a binary system with a urethral stricture causing retention, which made me prone to UTI's. Because at the time (1956...….I am now 87.) where I worked abroad there was no medication to treat UTI's. I developed an enlarged single kidney with a scar and a compromised double kidney, due to the chronic infections. When I returned home to GB six years later, I received regular checks, IVP's and appropriate treatment with regular renal clinic attendances, with the constant threat of facing kidney failure. So I know much of what you are probably feeling.

Now at 87 I am still only at stage 3b and even that can vary with blood checks. I have always eaten sensibly, plenty of vegetables and fruit, with mainly chicken and fish, tried always to keep warm, rested when necessary etc.

I hope my 'history' helps you whatever age you are. Just take care of your general health, (and contact the Kidney Association helplines if that would help you,) for their valuable advice and experience.

All the best.

[curleytop1 in reply to wingsofadove]

Hello Lyndon74,

I was going to give you similar advice to that given by Wingsofadove, but his/her experience is so valuable to know as I am only 77 and have had only one functioning kidney since birth (apparently the other one is a shrivelled up little thing that has probably never functioned at all). I was told by a renal specialist at our local hospital that most people diagnosed with CKD never reach stage 4 let alone stage 5, also that it cannot be predicted. So the advice you have been given above is sound.

It is very important that you eat a 'kidney-friendly' diet, and that you do your own research on this. Apart from the Davita.com site which everyone here mentions, there are useful food lists from many hospital renal departments which can help you work out your own eating plan. You have not told us in which country you are living, but in the UK it is almost impossible to have access to a renal dietician under the NHS system and I would not consult anyone else as I could not be sure they are qualified to give advice.

I was told to lower my potassium intake - unfortunately it is in almost all foods - and to AVOID smoking, drinking alcohol (never did this anyway, so no problem for me). Also eat as little salt as you possibly can and DO NOT use salt substitutes (read all labels on food), AVOID coffee and chocolate (though others on this site have said they do have them in moderation). Eat only low potassium fruits and vegetables - blueberries, strawberries, raspberries, blackberries, apples, pears and pineapple, a few cherries or black grapes, for vegs. use white cabbage, cucumber, radish, small amounts of lettuce, carrot, celery, beetroot. High protein foods need to be limited as well, eat only a specified amount of each one (you will soon become used to reading all the food labels on the food packaging) There are other options but I usually stick to these basic ingedients and really enjoy them.

If you have not already done this, it is important to have your blood pressure checked and to find out whether you have any other health concerns to think about, also to tell your doctor that you propose to start this 'kidney-friendly' way of eating and that you would to see a renal specialist for specific advice.

The best part of it all for me is that I have lost 3 stones in weight (42lbs), and more importantly, have managed to stick to the above eating plan, so hopefully will lose more in time. Also just joined an exercise class for over-60s for the first time in my life! When I was a 'new-comer' to this site, I found it very useful to read the many posts as it made me realise how many others have 'problem' kidneys and that everyone experiences a lowering of their eGFR as they get older. Hope this post helps - Curleytop1.

[RickHow]

I too have one kidney. One was removed from cancer. I am stage 3b. But understand your classification better. When I had two kidneys I was also checked every 4 to 6 months and told my egfr was normal. Never given a specific number, just normal. Then the kidney was removed. The next morning my first blood work, I was classified stage 3b based on egfr of 38!. Now think of that a moment. Is the remaining kidney really diseased? Is it really failing? Or is it just that I now just have one kidney, trying to do the work of two, and it obviously can not. And since the filtration of blood through my kidney is going to be slower (1 doing the job of two), my creatinine is naturally higher. And a higher creatinine says I am 3b. That is the trouble with the egfr classification. It has big flaws. It tries to apply a simple formula, one size fits all, while each of us is unique. I can only say what I would do if I were you. You do not tell your age. But assuming you have had prior blood tests, especially since you have a solitary kidney, have a look at your previous egfr levels. Perhaps you have always had this "rating" but just were not aware of it. Perhaps your previous ratings were close to this last one, and this last one is only slightly different than previous. (Egfrs can be affected by many things and a one time unusual test is not complete enough, a couple of tests are required). Also kidney performance does decline as we age. The point I'm getting at is you can NOT NOT NOT take the egfr and CKD system, as is, and apply it to a person with just one kidney. For example, a NORMAL creatinine level for a person with one kidney is 1.7 or 1.8. Yet if a person with 2 kidneys had that level it would be flagged as CKD. Now with just one kidney we must follow a lot of diet and exercise rules any person should to keep the kidney performing. But I think you are jumping to the wrong conclusion that you are heading for stage 5, that all is very bad, etc., etc. My doctors (5 different specialties) all tell me to throw out the egfr and ckd system. They simply monitor my creatinine level (that is remains in a constant range, which is has, although for a normal person would be CKD), my bun and creatinine ratio, and for protein in urine. That these are the factual indications if the kidney is filtering properly. All those levels, for me, have remained constant. An indication that it is NOT NOT NOT CKD, but just the numbers expected for a person with one kidney.