New to CKD

[Ritisha]

Hey y’all. I was diagnosed with see KD stage III been several months ago. I had been sick for a nine or 10 years and no one could figure out what was wrong with me. Turns out I had a congenital stricture of my left ureter. By the time they found it my left kidney function was down to 8%. I just really need someone to talk to. I tried the support line and believe it or not they said sorry not for you

[Healthylivin69]

How did they figure it out?

[Ritisha in reply to Healthylivin69]

They thought that I had diverticulitis. And did an abdominal scan. From there it was on

[Ritisha]

They thought that I had diverticulitis. And did an abdominal scan. From there it was on

[Runningman1963]

Hello I've had end stage renal disease 20yrs had a transplant and but creatinine was still high , had a few set backs but the Dr told me that new kidney wasn't going to get any better but it stabilize and I started exercising eating healthy and faith and I'm still fighting, so I don't have all the answers but I have a lot of experience and don't mind sharing.

[Ritisha in reply to Runningman1963]

Hey. Thanks for hitting me up. I guess I did not realize you could be in stage for that long. I’m glad you’re hanging in there. So far I have had a stent placed. I’m due to have that changed next month. I realize this is a small procedure in this big picture of renal failure. But I’m scared. I don’t have insurance so I cannot decide what my next step should be. I am pretty much at the mercy of the medical advisers at the community clinic. They have been really great. But only cover What is done in the office. Hence the new stent. And I did not get advised that I was in stage one or in stage two. So the big surprise party was for stage III. I was so sick. Feeling better now. Hence my hesitation for the next procedure

[Runningman1963 in reply to Ritisha]

Yes it's hard dealing with the Medical insurance company's I had my issues with them.

[orangecity41 NKF Ambassador]

I was diagnosed several years ago at stage 3b. My previous Doctor was not able to diagnose my condition. Prescribed renal diet and exercise routine has helped slow down the progression. The diet is well worth the effort. You have come to a good forum for information and support.

[Ritisha in reply to orangecity41]

Hey. Glad your progression has slowed. So. Low sodium. Low potassium. Low phosphorus. Low calcium. Am I missing anything?

[steve680 in reply to Ritisha]

Some people have had success with a plant-based diet, i.e. no meat, no dairy, no processed food. For protein, people eat plants such as broccoli. This is based on the theory that damaged kidneys don't handle animal protein well. A high protein diet that body builders eat is quite bad for damaged kidneys.

[Jayhawker in reply to steve680]

My nephrologist’s nurse practitioner just suggested that it would be okey for me to try a plant-based diet. I am in stage v now and was no longer interested in eating meat protein. But as I can have difficulty with elevated potassium I wasn’t sure going plant-based was an option for me. She said that it was and then said that they now have effective potassium binder medications they can prescribe if needed. She finished the topic by saying that newer research suggests that plant-based or vegetarian diets are better for those with CKD.

So I’ve been following a modified vegetarian diet for the past 3 weeks. In addition to high value plant protein, eg, black beans, I eat egg whites and some whole eggs. I’ve also begun eating tofu.

I’m definitely feeling better but haven’t had labs run yet. My creatinine has been coming in consistently between 3.0 and 3.1 with eGFR ranging from 14-15. My BUN has elevated to 73. I’m hoping that will come down some with this dietary change. Of course I’d love to see even a minor improvement in my creatinine and eGFR.

Regardless, I’m definitely feeling better and no longer having problems getting myself to eat regular meals. Of course, I’ve always preferred veggies over meat protein. So this does feel much more normal for me.

Jayhawker

[KelliC_NKF in reply to Ritisha]

Low sodium and low protein (or plant based diet) are great places to start. You don't need to limit phosphorus or potassium unless those are elevated in your blood. Avoiding processed food is also a great recommendation. Here's more information on diet to help:

kidney.org/nutrition/Kidney...

kidney.org/atoz/content/pla...

[jeff_RT in reply to Ritisha]

Yeah. Keep your sodium, protein, potassium and phosphorus low. What we did for my dad was to find food with low amounts of these nutrients. Might take some getting used to, cause now you'll have to avoid using salt when cooking. Cutting down on meat intake was a struggle, too (dad's a meat lover). These helped us.

kidneyfund.org/kidney-disea...

blog.renaltracker.com/pre-d...

Hang in there.

[orangecity41 NKF Ambassador]

My diet was prescribed by my Doctor based on my blood work for sodium, potassium and phosphorus which were high. These are restricted on my diet to certain amount each day. It may not apply to everyone.

[Ritisha in reply to orangecity41]

Thanks for the info

[Bassetmommer NKF Ambassador]

Hi Ritisha, what support line said not for you? Are you talking the peer mentor program? Please let me know. If not them here is the information to get a one on one mentor to talk to privately on the phone. It is a free service, but it is in the USA. Not sure where you are from. 1-855-653-7337

kidney.org/patients/peers

We are always here for you too so you can share your thoughts and concerns.

[Ritisha in reply to Bassetmommer]

Hey. Good morning. Yes. It was the mentor line. They said until my GFR drops to 30 or below they are not the place for me.

[KelliC_NKF in reply to Ritisha]

Hi Ritisha, thanks for reaching out to our NKF Peers program. Currently our NKF Peers program is geared for people in stage 4 CKD, those on dialysis or with a kidney transplant. We hope to expand it someday to support those in earlier stages, caregivers and for parents of kids with CKD but in the meantime, we created these online communities so you can still find support and connect with others like you. I hope the conversation you had with our Peers social worker, the information we sent you and the connections you find here will be helpful for you! If you have further questions please reach out to us anytime on our NKF Cares Helpline at 1-855-653-2273.

[Ritisha in reply to KelliC_NKF]

OK. I thought that I was desperate to actually speak to someone. But the online support group has really been helpful. I look forward to the mailings.. Have not received them yet. Thank you

[KelliC_NKF in reply to Ritisha]

I'm glad you've found this online community helpful! Looking forward to continuing the conversation here and seeing how things go for you - wishing you all the best!

[KidneyCoach NKF Ambassador]

A diagnosis like yours can be very scary and daunting. Just know you're not alone. I found out I had kidney disease 40 years ago. On dialysis going on 18 years. Unfortunately we all have our burdens. We can help each other. Ask questions or vent. You aren't alone. If you need more send me a private message here. Blessings

[Ritisha in reply to KidneyCoach]

Thank you. I thought it was a bit much to be a diabetic for 46 years. And then to have kidney disease because of a congenital issue. Initially it felt like a bad joke