A bit confused....

[Winter1963]

Have just been diagnosed with ckd stage 3a. Do I need to be worried about this given that it may not progress to stage 5? Does ckd affect both kidneys? I’m thinking it’s not a big deal but everyone around me is panicking. I’m new to all of this, live in a small country town out in the sticks where GP’s are fairly casual about most things. Any advice from someone who has been at this stage?

[Allank]

on what basis did you get the diagnosis - kidney issues , blood work , 24 hour urine sample ? the interventions are a healthy life style - exercise , renal friendly diet - best to see a renal dietition , keep blood pressure normal

[Winter1963 in reply to Allank]

Hi. It was picked up (by a specialist nowhere near this field of medicine) in a blood test because I was so tired. From reading the replies so far it’s not anything I should be concerned about. I just don’t know where it came from as I have none of the causes.

[Bassetmommer NKF Ambassador]

hi Winter,

CKD is a progress disease that can be slowed down. Many people live great lives with Stage 3. But now is the time to become educated on CKD. I will post some websites for you to look at.

The next steps are to find out what is the cause. Diabetes and High Blood pressure are main culprits. If you have those diseases, get them under control. Working with your health team, you should review all you medications to make sure you are not taking anything that is harmful to the kidneys. You can even check with your pharmacist. You might try to have a consult with a renal dietician. You can really help yourself with changing up your diet.

Here is a simple plan to start:

1. Eat out infrequently. You have less control over your food choices.

2. No fast foods

3. No process foods such as frozen dinners or packaged products

3. Less meat the better, chicken and fish still have high potassium, eat sparingly

4. 1-2 cups of coffee and use real crème not non-dairy

5. Lots of water up to 2 liters unless told by the doctor to drink less or more

6. Incorporate more whole foods in your diet: vegetables and fruits

7. Little to no alcohol especially beer One glass of wine might be ok

8. Cook without salt. You will get used to it and then eating stuff with salt will taste bad

9. Do not take supplement, OTC drugs or other without checking with the doctor first.

10. Get Educated. Take classes on how to manage kidney disease.

kidney.org/atoz

davita.com/education/kidney...

Hope this helps. Keep asking questions.

[Winter1963 in reply to Bassetmommer]

Thanks for the advice. I have researched ckd extensively but it doesn’t answer a lot of my question. I have to know the whole scenario because that’s my nature. I really want to know if I should tell my family/work as one of my Doctors told me that my kidneys could fail at any time. One Dr is very concerned about it, the other couldn’t care less.

[horsie63 in reply to Winter1963]

Not sure about the "could fail at any time" comment from your Dr. Mine started in Dec 2015 and has steadily decreased to the point where I'm stage 4 with a eGFR of 17. I'm working towards getting a transplant before I have to go on dialysis. Mine was caused by poorly controlled HBP and the use of OTC pain meds (aleve, excedrin migraine, etc)

[Hidden]

Hi

To begin to learn and understand CKD, use davita.com, and sign up for a virtual, free 90 minute Kidney Smart class. Learn all you can, ask questions, and be on your way to being proactive.

A kidney-friendly meal plan and an acceptable exercise regimen designed for you by a physician are your first steps to help you slow the progression.

Best of luck.

[Winter1963 in reply to Hidden]

Thanks. I’ll have a look at this.

[Hidden]

First off, one blood test cannot diagnose CKD. Even by the current definition you must have 3 consecutive blood tests with elevated creatinine. Secondly, the current method of diagnosing CKD is bad, Creatinine varies wildly in even the healthiest of people because of diet, exercise, medications and thousands of other factors the doctors don't even know. Third, even if you do have CKD, most people who have it never even get bad enough to need dialysis let alone a transplant.

So, you need more tests before you accept that diagnosis, you need a urine test to see if you have protein leaking. You need to know your cystatin-c egfr. Since you say you have never had diabetes, HBP, or some other problem that would cause CKD it is possible you have naturally high serum creatinine that has nothing to do with kidney function.

Be skeptical of the diagnosis and don't panic, worst case you'll need to adjust a few things like diet and fluid intake.

[Winter1963 in reply to Hidden]

Thanks for the reassurance. I have had blood tests over the last 12 months where my gfr has slowly reduced to 54 and creatinine of 100. Had a iv ct scan with no results of stones or any other reason to explain the bloods.

[lowraind]

Knowledge is Power:

The two books that helped me most were: Living with Chronic Kidney Disease -Pre-Dialysis and Create Your Own Kidney Diet Plan both by Mathea Ford. The first is a very general introduction and the second helps you set up a plan and helps you track consumption. I got them both at Amazon and found them very helpful.

[Winter1963]

Thanks for the advice.

[KidneyCoach NKF Ambassador]

Firstly it is very uncommon to have CKD and suddenly go straight to failing kidneys at any moment. That doc was very wrong to say that to you. It may be he was trying to emphasize it to you that you'll need to learn to self-manage your health and do it well through education etc. kidneyschool.org is a great place to start. Even those the following link is a book highlighting dialysis it covers a lot about CKD. I've given away many of these books.

lifeoptions.org/resource-li...

There is no need to "worry", there is cause for "caution", education, management and more. The only person who has total control is you. Hang in there. Blessings

[Bassetmommer NKF Ambassador]

HI Winter,

Where was the GFR last year? How fast was the decline to 54? There is usually a reason for this. By looking at the websites mention, educate yourself on what the labs mean. There is usually a clue as to what is going on. Then you can tackle the reason for the decline. Medications are a big issue and so are supplements. Do you take over the counter meds? Do you take ibuprofen? Terrible stuff for the kidneys. Look at your diet? Do you eat a lot of red meat? (Not that would shut down the kidney usually, but it is not good for them) Is the parathyroid working right. These are things your doctors should be checking out. The one doctor who dismissed your concerns..... I would fire them. You need support, not ignorance. Get a medical team that is going to be there for you.

webmd.com/a-to-z-guides/lab...

[mannp]

I have been at CKD 3 for over 20 years. It always is stage 3. It just showed up on labs way back when. At that time I wasn’t on any medication or supplements, nor am I diabetic and I have low blood pressure. The BP is below 100. I don’t have much muscle and I am now 67 years old. I’m fairly healthy with an exceptionally good immune system. I get sick less than once a year. I have parkinsonism and chronic migraines and age related mild arthritis. I have no idea the cause or why it is stable for so long. I don’t give much thought to it anymore. I hope my story can bring you some hope and comfort. It’s not a death sentence or a sure sign of kidney failure. I now avoid all NSAIDS. I only use Tylenol on rare occasion. I don’t take any precautions. I don’t use salt and never have. I don’t like it. I rarely eat chips or other salty food. I have been very healthy my whole life as were my parents. I come from healthy stock. Stay positive and live a healthy life style. I think having a positive attitude helps to overcome many barriers. Good luck to you. 👍🏼😊

[Blackknight1989]

Certainly the above is good advice except “I don’t give it much thought anymore.” It should always be top of YOUR mind as you are you best advocate. Strive to know more about CKD than anyone on your care team. Ignorance is the main issue with this diseases both patient and GP. It requires constant vigilance. If you had cancer would you just forget about it? Nope! Same with CKD. What if you have a car wreck and you are unconscious with no way to warn the ER staff. Could result in death. With the reluctance to give opioids for pain now is back to NSAIDS. One shot of a script NSAIDS might be enough to cause AKI and death. I’ve had 2 instances where I had to force non-nephrologist to listen to me and not just treat me as SOP.

Stage 4 since ‘96. Diagnosed and 4 days later AKI. Stage 4 had a worthless ER doc who sent me into metabolic acidosis. 6 months in MICU. Woke up on a vent. Probably should have died but by some miracle I did not. 2 months on the vent 6 in MICU. New doctors first words, “ you will not recover you will die!” So take charge of your health cause no one will do it better. Always ask if conscious what going into your body via IV or mouth. I was hospitalized for Osteomyelitis that was misdiagnosed because the doc was ignorant. He forced me to the hospital. It was gout but because in the knee he didn’t believe. ER staff roomed me and the nurse came in with a huge syringe of NSAIDS. I asked she told me I refused she said I would HAVE to take the meds. Not. She got the doc who thought I was crazy and wanted me on 72 hours psyc watch. Anyway I raised such a stink the ER director came in and we got it straightened out. They finally called my nephrologist and I thought he was going to blow a gasket. Long story short be your protector until you can’t because you are the best of anyone if armed with proper knowledge.

These are US sites but applicable. Stay away from media. They are clueless! Learn how to read med studies.

NKF, ASN, NIDDK. DeVita is good too. AAKP, and. rsnhope.org/

All are .org so good luck!

Go to the resource section of each and you’ll find additional sites to include European sites. Get smart most aren’t and that causes issues! My best to you!