My experience with CKD: I wrote this in a... - Kidney Disease

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My experience with CKD

Rhubarb58 profile image
16 Replies

I wrote this in a chat and then realized that maybe sharing my experience with everyone, might help someone. So here's my story.

I too, have CKD 3A and I also was given the, "ok you have it, see you next time!", from my GP and even from the first nephrologist I went to. It didn't seem right to me so I took it upon myself to get the ball rolling. I don't have diabeties so I cannot speak to that or any complications between the two. The sooner you act, the sooner you can hope to get your CKD stable. My has been stable for 3 years, maybe longer.

#1: I found another nephrologist, then asked my GP to write me a referral. This nephrologist is a saint. He took the time to answer all of my questions. I told him about 4 other doctors who brushed it off and that I thought, the earlier you treat it, the better. He agreed with me.

#2: I found a nutritionist at the same clinic/within a hospital. Then I did the same thing and got a referral.

#3: Diet. Even though my nephrologist saint said that my body can still handle any potasium that I give it, I still track it daily. Along with sodium, potassium is usually the second highest level ingredient in many foods, and is bad for your kidneys if you eat too much of it. I also watch my sodium daily. That's another one that knocked off a lot of foods I ate. Phosporus is another to keep an eye on, but I have not found it to be a real issue in the foods I eat. Avoid processed food. That finished off all of the foods I was eating. My eating habits are terrible and I always grabbed whatever was the easiet. The dietician has me taking Vitamin B12 with folic acid. The folic acid should be around .8, which is what I think most vitamins have. Watch for sales. Vitamins are always on sale. Look up some food lists because there are foods on the list that you might not consider ones to avoid. Look up Fletcher Allen Healthcare-renal nutrition services, and kidneyfund.org. They have some great food lists and lots of information. There are also a couple of groups on FaceBook that share info and recipes.

#4: Exercise is important for kidney health, actually overall health anyways, but like your heart, it is especially good for your kidneys.

#5: My GP has me going in for lab tests every 6 months. They may not check for vitamin D, but again I just asked them to include it, and be sure to fast each time whether the doctor tells you to or not. Just tell the phlebotmist that you are fasting and they usually note it on the report. If not, just tell your doctor that you fasted ahead of getting your blood drawn. Fasting will give the best idea of where your levels are because they are not being influenced by food. I always make my appointments early AM so that there hasn't been any food in my system for 9-12 hours.

I was really concerned (afraid!) of what CKD was going to do to my health, but I took charge after some research and concern for my health. I cannot believe that many doctors look at stage 3 and say, 'meh.' Research, consult, question and question again, and talk to your doctors about what you'd like to do and ask what they think about it. Do what you think is best, within reason. You are your own, and maybe only, advocate.

This is only my experience with CKD. When I was told I had CKD, I was at stage 3 and stayed there for a long time. Some years ago, maybe 3 or 4, my numbers went up and I was/am stage 3A. My numbers have been steady since, in fact once I got consisitent about looking at food levels, some of my blood results levels changed to be more positive. Some are minus when they are a positive thing and some are negative as a good thing.

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Rhubarb58
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16 Replies
orangecity41 profile image
orangecity41NKF Ambassador

Thanks for sharing your CKD story.

drmind profile image
drmind in reply toorangecity41

What a good story to share. Thank you

Rhubarb58 profile image
Rhubarb58 in reply toorangecity41

You are welcome!

Rhubarb58 profile image
Rhubarb58 in reply toorangecity41

You're welcome

Rhubarb58 profile image
Rhubarb58 in reply toorangecity41

You're welcome

Rhubarb58 profile image
Rhubarb58 in reply toorangecity41

I may have sent this 2x already, but it doesn't show up after your message and I wanted to be sure to say you're welcome

CMacs profile image
CMacs

Thank you posting this! So helpful as newly diagnosed w CKD. I have been doing research on my own and have been wanting a consult w a nutritionist. Guess I’m in the right track. I believe it is truly important to advocate for oneself, research one’s illness and ask questions.

Thank you again

Rhubarb58 profile image
Rhubarb58 in reply toCMacs

You're welcome

Bassetmommer profile image
BassetmommerNKF Ambassador

Good for you and thanks for sharing. Keep the good work up and hopefully you will live a long and healthy life.

Rhubarb58 profile image
Rhubarb58 in reply toBassetmommer

You're welcome and thank you!

6V53 profile image
6V53

I agree that you have to be your own advocate. I'm on my 4th nephrologist and she is part of a team. Occasionally I have to see one of the others in her office, but they are all great.

I am also surprised when nephrologists say things like "you shouldn't feel this bad at this level" and brush you off.

CKD 27ish years, transplant 6 months. I feel freaking awesome.

Rhubarb58 profile image
Rhubarb58 in reply to6V53

SO happy for you!!!!

Beachgirl32 profile image
Beachgirl32

thanks for sharing your journey with us, I hope your labs stay steady

Rhubarb58 profile image
Rhubarb58 in reply toBeachgirl32

You're welcome

bevgt profile image
bevgt

Such a positive story made me feel better . Well done

Rhubarb58 profile image
Rhubarb58 in reply tobevgt

I'm happy it made you feel better. We've got to stick together and share anything positive that comes along.😉

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