New to post any am worried also I have CKD ... - Kidney Disease

Kidney Disease

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New to post any am worried also I have CKD Stage 3 but doctor says I am fine for now. Don't understand that

Biggybaby19 profile image
13 Replies

Good Morning,

I am a 64 year old female that was born with only my left kidney - didn't find out until my mid-40's by then I had been a chronic alcoholic until 30 but not my gfr is 59 and everything else is basically okay. Slender, don't exercise, eat processed mac n cheese with broccoli and have never liked fruits and vegetables. Shouldn't my doctor have me seeing a kidney specialist - can I have dialysis with only one kidney or see a dietitian for a proper diet. I worry all of the time but doc says I'm okay.

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Biggybaby19
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13 Replies

With only one kidney you should have been seeing a nephrologist for many years now. Maybe only twice a year but definitely running labs. I don't like to assume but if your PCP knows about this one kidney he shouldn't have any reason to deny you a referral. It's your health and you have a right to speak to a specialist. Some of this may depend on your insurance coverage but that is another, sad matter. If your PCP still refuses to provide you with a referral, then I'd like for a different physician. You might want to remind the doctor of the line in their oath that states, ...First, do no harm... By denying you access to a specialist, with your history is harming you. The sooner you get yourself on a kidney-friendly meal plan, increase your exercise regimen, watch your medications, stay hydrated, and have blood and urine labs done on a regular basis, you can prolong the progression of CKD for a good while. Starting out with only one kidney is going to make it harder as well as the damage done form the drinking, but you need to get started right away.

To help yourself you might want to start weening yourself off the mac-n-cheese. It's a no-no for CKD patients. Start learning to eat more fruits and vegetables because you need to cut out much protein and red meats, processed food, and cheese are on the can't have list.

You might also want to visit the davita.com website and register for a free, 90-minute Kidney Smart class in your area (if in the USA). It will provide you with a lot of information on what changes you should be making to stay off dialysis for as long as possible, as well as give you access to a lot of resources to get you through this. Best of luck.

Biggybaby19 profile image
Biggybaby19 in reply to

Thanks so much for taking the time to write. I am calling my PCP on Monday as I have worried about this enough. Not drinking for 34 years except for a couple of short (one week) relapses may have helped. I am on Blue Cross Blue Shield Medicare Advantage and they have never given me a bill for anything. I am very lazy about diet and exercise and I admit that it's typical for me to wait until some disaster happens before I do something but at 64 I am already lucky to be alive. Mom had cancer at 61 for 17 years - rough life.

I have signed on to DaVita kidney care in my areas as coincidentally DaVita is my circle of doctors. My PCP has an incredibly good, I mean incredibly good reputation and I have been with him since 2011 so I know he takes good care of me. I will call him and hope my new blood results don't show that I have advanced in my loss of kidney function. Thank you again for your input as I have no friends, family and my husband is physically and mentally challenged so he doesn't even remember that I have a kidney problem. Frustrating!

in reply to Biggybaby19

Hang in there. You do have a full plate and being proactive is a great way to ensure that as you take charge of your health care and build a strong Care Team you will find that the more you learn about CKD and the path ahead of you the less negative stress you will have because you have a vision of where you want to go and how to get there. This site has many folks who have been where you are and will be more than willing to share their information with you to help you get control. As time goes by you can pay it forward when you offer help to others on issues you have already learned to deal with.

Biggybaby19 profile image
Biggybaby19 in reply to

Actually I am taking the Kidney Smart class online through DaVita right now so maybe I'll get off my butt and do something about this instead of worry!

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to Biggybaby19

Another fantastic educational site is kidneyschool.org. Blessings

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to

CKD stage 3 with gfr of 59 is not bad. Most don't need dialysis until gfr is 10 or below. Many are able to stave off dialysis indefinitely with positive changes in diet, exercise, hydration, bp control. Cheese is not on a "can't have" list rather limit. Definitely see nephrologist annually as possible. Worrying will change nothing and will steal away your thoughts and peace of mind. Do what you can and stay positive. Blessings

Bassetmommer profile image
BassetmommerNKF Ambassador

Hi Biggybaby,

Welcome to the community. You have a lot going on and I was glad to see that your are going to take the Davita classes. The more you learn about CKD the better advantage you will have to maintain your function and health.

Along with this community, there is a peer mentor program designed for Kidney patients. It is a place to have a mentor assigned to you who will be there for you specifically with your questions and support. We do not replace your medical team, but are patients who are trained to listen and be supportive....because we walk the walk.

It is free and they will match you with someone who has similar issues. It is really a nice thing to do and know someone is in your corner.

Here is the number 855-653-7337 and here is the website to sign up kidney.org/patients/peers.

kungfudude profile image
kungfudude

Biggybaby, I too was born with only my left kidney functioning. I am 58 year old male and only recently saw a nephrologist for the first time. This is because my gfr fell to 38 and creat went up to 1.86. My family doc told me to eat less red meat, and limit my sodium to 2000 mg/day. So I started this in January. In April I did blood work again. After educating myself on how much salt I was eating without realizing it, and how much salt is in almost everything without realizing it, my gfr went back up >60 and my creat fell to 1.21...and now I've lost 16 lbs in 4 months by eating better.

Nephrologist says our kidney function does drop as we age, that stage two is pretty normal. So I'm due for another blood work in July. I'm hoping the January result was an anomaly from me eating poorly without really paying attention. So definitely start reading labels. And check nutrition info for restaurants. Some have dishes I thought I was eating better, only to learn that they had 3000 mg salt just in that dish alone.

And btw, I remain very active, as my name suggests.

Hope this helps.

Biggybaby19 profile image
Biggybaby19 in reply to kungfudude

WOW you are very disciplined and I admire that. I have never salted food in my life so what I get from what I eat is it although besides the mac n cheese 3 times a week (those little Stouffer's portions I eat 3 salads a week but I am going for my annual check up and blood work on the 7th of June so I will have to straighten up FAST if my blood work is worse. I do not keep myself hydrated as I can't stand water but I will learn to tolerate it if my life is in jeopardy. Congrats on all you do to take care of yourself - and you are 6 years younger than me so I hope I can get my self together and stop being so complacent (lazy)!

kungfudude profile image
kungfudude

You can still eat the stuff you like...if you control your portions and count it. Try to know the amount of salt that's in whatever you're eating. (Researching that really helped me)

Avenger profile image
Avenger

My GFR is 24, stage 4. Yours sounds good to me.

Biggybaby19 profile image
Biggybaby19

I know it's a matter of perspective as I have read many stories so worse than mine (and yours) it's just weird after being on this site that my doctor doesn't seem to have any concerns about kidney friendly diets and all that goes with it. BUT I will get my complete annual in a couple of weeks and I will take it from there. Thanks for writing.

taivin98 profile image
taivin98

You answered your own question...go see a kidney doc. You should have been seeing one on a regular basis since you found out you had 1 kidney...your diet sucks. Visit to a nutritionist is in order...Aloha

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