New here : Hi all, I am new here from North... - Kidney Disease

Kidney Disease

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amanda0675 profile image
amanda0675

Hi all, I am new here from North Carolina. I was diagnosed by my primary care physician in September with Stage 3A Kidney disease. It has been a big learning curve and I am adjusting my fluid intake, working on my diet and exercise and trying to learn about this disease and cope. I do work fulltime as a high school counselor (summer break starts tomorrow actually), so I am hoping to have a routine down by the time school starts back in late August.

I'm here looking for information, as a sounding board, etc. Right now other than my kidneys hurting from time to time, I am also tired and today I seem to be cold even though it is 90 degrees outside. Hope I am not going crazy lol

12 Replies

Hi and welcome to the community. It sounds like you have a handle on the need to learn about CKD and therefore stave off any unwarranted issues about the path you will be traveling down. You should be asking your PCP for a referral to meet with a nephrologist. Bring your recent labs that were used to make the diagnosis with you and a list of all medications you take, including OTC and supplements. Ask any questions you have when you meet and if it is allowed, bring someone with you to take notes so you can concentrate on the physician's information. If not, you can, with approval of the physician record the session to play back later. You mentioned you were adjusting to fluid intake and diet. Who designed the objectives for you? The nephrologist should be involved with this, and you can also ask for a referral to meet with a Renal Dietitian. Again, bring your lab reports with you. You and the RD will look over the results of the labs and design a kidney-friendly meal plan based on your preferences and needs. Look at your labs and see where your numbers are with regard to protein, potassium, phosphorus, sodium, and calcium.

The two leading causes of CKD are diabetes and hypertension. Both need to be under control to slow the progression of CKD. If you have neither of those issues the nephrologist can run diagnostic tests to determine the cause of your CKD. The next step is to have a physician approved exercise regimen.

You can also go to davita.com and register for a virtual, free, 90-minute Kidney Smart class. You'll receive a lot of information and resources. You've found this community and there are a lot of knowledgeable folks here who are willing to share information and ideas with you.

FYI, I'm a retired special ed teacher/behavior specialist and there are other educators in this community.

Best of Luck.

amanda0675 profile image
amanda0675 in reply to Mr_Kidney

Hi there and thank you for the welcome. My PCP has made the referral to a nephrologist and we are just waiting to here. I am from a small town in Western NC, so the nearest one is 30 minutes away and is only in that office 1 or 2 days a week. My PCP gave me a diet plan to start following and I was having some puffiness in my face, ankles and fingers from fluid retention and so she suggested I cut back on my fluid intake for now.

Its great to meet another educator. This year has been a tough year for Public education with the pandemic and my stress has been super high which is not good for the kidneys either or my blood pressure. So I am ready for a nice relaxing summer

Mr_Kidney profile image
Mr_Kidney in reply to amanda0675

If you see any other specialists like a urologist or cardiologist be sure to let them know as soon as possible that you are Stage 3 CKD. If you are taking any medications ordered by them it's important to keep them up to date. You might like to use drugs.com and use their MY MED LIST feature. Enter any medications you take and when finished you'll find out about any interactions with other meds, CKD, and even food. Discuss any issues you find with the nephrologist.I'm also in a rural area in my state and after the initial first two meetings with my RD I learned how to make minor adjustments with my meal plan and I use e-mail to discuss any additional changes. Her office is about 2 hours away. Most of my physicians are about 40 minutes away and there are times when that can be a pain but I found out quickly when putting together my Care Team it was better to travel to a more competent physician than deal with some that were closer.

Enjoy your summer.

orangecity41 profile image
orangecity41NKF Ambassador

Welcome to the forum where we share information and support one another. As Mr Kidney mentioned Davita class is a good learning experience. They also give it on line. davita.com. They also have recipes and a diet tracker when needed. I also track my eGFR results and keep an average.

KidneyCoach profile image
KidneyCoachNKF Ambassador

Check out home dialysis central, nkf.org, akf.org, aakp.com, freseniushealth.com, kidneyschool.org You will have a plethora of information. Blessings

Have they checked to see if you have anemia? That can cause both tiredness and feeling cold. I had severe anemia set in very early when I was in stage 3a. It’s treatable and one possible side effect of chronic kidney disease.

Jayhawker

How is the anemia treated?

It depends on the cause and severity. There are prescription meds and also EPO injections, Irin IVs etc.

Jayhawker

Thanks.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Jayhawker

I too have been diagnosed with anemia at level 3b.

Amanda, I am in the same boat as you - except I am stage 3B. The hardest part of the diet is learning to cook without salt but in my opinion once you get used to it the food actually tastes better. By chance, are you on any blood pressure medications?

Amanda, hai and welcome. This is a great place for people like us. ul find a lot of experienced people here who are extremely helpfull. to begin with u should give ur med reports thats if u dont mind. without wich we all would be lost in the dark., and whats ur Doc saying.

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