Looking to learn

[JMRC]

I'm so happy this group exists. My son is 15 and has kidney disease in his only kidney. He lost his right kidney to MCDK. He was just diagnosed in April as stage 2 and we've been on a mission ever since to keep it that way. Adjusting diet, hydration and taking BP meds. While he is still early I know, i am looking to really learn all I can from other members here.

[KelliC_NKF]

Welcome and thank you for sharing your story! Sounds like you have a lot to offer other parents here as well!

[AHP2018 NKF Ambassador]

Welcome! We're so glad you've joined this group!

[Olena1986]

How is your son doing now?

[JMRC in reply to Olena1986]

Hi! well its been 6 years since I posted here. My son is 21 now and just had his first adult nephrologist appt. He is still on the same regimen: hydration, watching sodium intake and bp meds. he is still stage 2! We did genetic testing last month and just got results back. We are waiting to review with the doctor but some interesting findings I am still learning about. I am currently trying to "hand off the baton" to him so he can be his own advocate and go to these appointments alone. Thats hard. lol. I hope things are going well for everyone on here as well.

[Olena1986 in reply to JMRC]

Thank you very much for writing me back. My daughter is 10 years old and also stage 2. Please tell me whether you give all fruits and vegetables to your son. And what pills do you take for hypertension? We were also prescribed ramipril, although the child does not have high blood pressure.

[JMRC in reply to Olena1986]

He does eat alot of fruit/vegies because they are 0 sodium. He takes Lisinopril 5mg a day, he is prehypertensive but he also has Proteinuria and that med helps slow the protein leakage.

[Olena1986 in reply to JMRC]

Thank you very much for your reply and I am very glad that you are not progressing. Please let me know if during this period you had a rise in creatinine and then a decrease.

[Olena1986 in reply to Olena1986]

We did creatinine in 3 laboratories and there were different indicators, some pointed to stage 1 and others to stage 2