RCC survivor & CKD patient

[Hekella]

Aloha i am grateful to be here & hoping to learn more about how to live with ckd & sharing thoughts , ideas , & hope ! I lost one kindney to rcc in 2006 .I was just diagnosed with ckd. I have been feeling really bad for months & just got a nephrologist. The high blood pressure , high potassium & insomnia have been a beast to deal with .The arrythmias & er visits have just kicked my butt ..

[Bassetmommer NKF Ambassador]

Aloha back to you. Welcome to the Community. You are in a good place. So sorry things have been difficult. But this is a great place to get answers to specific questions. We are all in this together.

You can find a lot of information by going though back posts or using the search button on the top for specific questions. Please ask away if there are things we can help you with. We will not diagnose or prescribe but love to talk about our own experiences and what works for us.

[rubysmom]

Hello hekella! My name is christina. I also had renal cell carcinoma, and list 1/2 of each kidney, now ckd, stage four. I’m glad you have a nephrologist, I’d be lost without mine. My biggest difficulty is the food. I have extremely low sodium and low blood pressure.. weird.. so finding a balance is difficult. This month I’m meeting with a renal dietician to hopefully figure this out. I have Von hippple lindau disease which is a whole issue in itself, in short, I get tumors and cancers and don’t have a specific genetic marker to stop it, so renal cell was one thing. Now I’m mostly dealing w just finding out I just dropped to stage four. Anyhow, I’m thankful to find this group and hopeful I will find advice and comfort from those brave ones who are trudging this road with me! Welcome!