So many questions

[Angie2020]

I have so many questions to ask but my doctor doesn't have a few hours to answer them all.

For instance why aren't people told that their kidney function is in decline by their doctor until they start getting symptoms or get to stage 3. This seems cruel and wrong to me?

Why is your creatinine level so important?

What exactly does end stage mean ?

How long can a person stay on dialysis?

Is there life after ckd diagnosis and will my anxiety ease after getting the news?

Is my lifespan limited now. Do experts really know how long a ckd patient has left from the time of diagnosis and their lab results

On average how long does a kidney transplant roughly last if it's a close relative?

These are questions I want to ask a nephrologist but haven't seen one yet

[Hidden]

I will answer some of your questions but they may not be in order.

A failure on the part of many physicians to inform their patients of their developing CKD is the only answer that makes sense. Many of us are in the same situation as you. Not the best answer but still time for you to get serious about diet, exercise, control of medications, and a few other things will get you started.

End Stage is known as ESRD, End Stage Renal Disease. Basically, it is Stage 5 of CKD and when your physician will be speaking to you about getting ready for dialysis. You don't have to wait until then to start researching your options.

How long a person can stay on dialysis is different for each person. It depends on age, ethnicity, other health issues, genetic issues and how active your lifestyle is. Most of the answers to that depend on how serious you are in controlling your diet and exercise, how you control other health issues, genetic issues and how serious you take the changes to your life.

There can be a long, productive life after you get the diagnosis. Change your eating habits to a kidney-friendly meal plan and monitor your lab values to know what you need to control and how to maintain optimal health conditions. Put together a Care Team of physicians, nurses, dietitians, and other professionals as needed to work with you on being the healthiest you can be. Tough decisions will need to be made by you after consulting with your doctors but the final choices must be up to you, and you have to make sure your doctors understand this.

All of the factors I've already mentioned effect how long you live. If you do all the things I've mentioned, diet, exercise, medications control, understanding your labs and what each test tells you. The more you learn, the more proactive you are the better you will be live a happy, productive life and able to handle all of the health issues that come your way.

Too many factors enter into how long a kidney transplant last to give you an intelligent answer. However, there is much to do now to even worry about that. Learn about the various Stages of CKD and what you can do to slow down the progression.

If you live in the USA go to davita.com and look for a free, 90 minute Kidney Smart class in your area. If you live outside the USA go to kidneyschool.org/mods/ to find a series of Modules to learn at your own pace about CKD. That same website will allow you to look at Recipes that are kidney-friendly and help ease the work your kidneys can do. Also, on that same website put "What is Creatinine?" into the search line and you'll find an excellent explanation for that question.

Use drugs.com to check on your medications and see if anything you are taking for other health issues are counter-productive for CKD. If so, speak to your doctor about change medications or reducing the dosage.

To better understand your labs use labtestsonline.org to understand all of your blood and urine tests.

Ask your physician for a referral to a Renal Dietitian and bring copies of your lab values with you and have that professional help you develop a meal plan for you.

Have your physician work with you on an exercise program that you can do all year and stay active.

If you smoke, stop. If you drink alcohol, cut way back if not stop completely.

Come back here often to share and learn from the many knowledgeable experts here in the community.

[Angie2020 in reply to Hidden]

Thank you so much for all your help and the links which I will be using. Thank you Mr kidney

[Annica in reply to Hidden]

Everyone is talking about kidney friendly diet. But a lot of what one eats to help kidneys is raising

heck with the thyroid & diabetes. So what does one do about that. No one food is good all conditions. I feel like I have to chose which condition I should treat.

[Hidden in reply to Annica]

You have hit upon one of the biggest problems many people have to deal with when they find they find have a chronic disease. You have to find a balance and often a point comes where you may have to take a medication the helps one condition but may be problematic for another. This is why it is so critical for everyone with CKD to learn all you can about it and the other issues that you have and be able to make informed choices when your Care Team makes suggestions.

This is where you really need the advice and input of a Renal Dietitian. When you have them look at your lab values, lifestyle and other health issues they will be able to work with you and develop a meal plan that will work for you. You are exactly correct in that sometimes you have to may choices that may help one condition and not another. For the year and a half before I was finally told I had CKD, I went on a self-developed diet, not a named one or one with a book/author behind it, and I lost 130+ pounds. At the end of June 2017, I was told I was at Stage 3 of CKD. I made an appointment with a Renal Dietitian and brought my labs and other health information with me. We developed a kidney-friendly meal plan for me that surprised me. Most of the food I had switched to for my weight loss program was no longer good for me to eat because of CKD.

Since June of 2017, I have followed the kidney-friendly meal plan and made changes to my exercise program, worked with my Care Team and changed medications in order to find that balance. It's not over with. I have to constantly watch my numbers and made adjustments. At its lowest point, my GFR was a 32 and as of a couple of weeks ago it is at 57. On paper that looks good and I'll take it but that range still has me within Stage 3.

How many years did you, me and many others eat what we wanted, exercised (or not), took any medications we were told, used over the counter supplements, and blindly follow a physician's unquestioned edicts? Meanwhile, our kidneys plugged along doing their best to keep functioning while we blindly and blissfully went on our merry way.

Sorry about the preaching. I should also add that my comments didn't even touch upon the folks who have to deal with genetic issues that caused their CKD and other health issues.

Anyway, you've had, in many cases, the good times. Now it's time to deal with the not-so-good times. Get with an RD and discuss everything and find foods that will work for you and all of your health issues. I did that 10 months ago and guess what? I'm still having the good times. They are different than they were before but they are good. They are also healthy for all of me.

[Nicolala]

Hi Angie2020

Your questions have been answered in great detail.Just a few comments:

In terms of longevity of life- I'm into my 27th year on dialysis. No transplant- 1 attempt which was unsuccessful. I go to work and enjoy life. You wouldn't know I have ESRF unless I told you. I'm 47 and plan to last at least another 15 years.

I'm lucky, but I'm also positive and determined to make the most of what I have. Good luck.

[curleytop1]

Hi Angie2020, I see you live in the UK as I do, and that you have not received much help and advice from your GP which is what happened to me. You have not said your age so my advice may not really help you as it may be for older people only, you would have to check with your pharmacy, but my one has a new NHS free service which offers a review of one's medications, discusses any medical, dietary, well-being issues one may have and gives advice on how to solve them. This is conducted by a qualified pharmacist, (my one is marvellous and has a mother-in-law with same problem as me). She was able to discuss particular foods and portion sizes which I also found useful. I found it so reassuring that I was doing and eating the correct things for me (I am 76, diagnosed stage 3 CKD at 74, female with only 1 functioning kidney probably from birth, also have a brother with same problem but 3 years younger!)

I have posted before about how I went about finding information regarding what foods to eat, I just started by googling in 'what foods are low in (here you can put in 'phosphorus' instead of my 'potassium') phosphorus' UK? Then pick sites which seem suitable, often UK hospitals' Renal Departments have lists of suitable foods and drinks, note them down and start to compare them so as to have a base from which to make simple meals, they should also tell you to cut out salt (also salt substitutes) and sugar (and sugar substitutes) as much as possible, and give a few general pointers of what to do to help yourself.

In the same way you can research the answers to your questions re the progression of CKD, though, as you can see from the many posts on this site, it is very variable and I have read from several sources that most people can help themselves by following a suitable kidney diet and that it is not inevitable that they will ever need dialysis. Hope to have been of help and wishing you good luck - Curleytop1.