stage 3

[Otterlover47]

My daughter was diagnosed with CKD in September. At that time she was stage 2. We just got more testing and she is now stage 3 (almost stage 3B). I hear stage 3 is when medication starts. Is there any advice you have to share that can help when we see the doctor later this week ?

[Otterlover47]

she is 15

[MatrixMatriarch]

my son is stage 3 and is 5. We have been on a b vitamin, electrolyte medication and a couple of others here and there. It has been manageable. You will settle into a routine. I wish you luck! Keep us updated!

[Otterlover47 in reply to MatrixMatriarch]

Thank you. I appreciate your response. I wish you luck with your son!

[MamaV80 in reply to MatrixMatriarch]

Hello - what kind of CKD does your son have ?

[MatrixMatriarch in reply to MamaV80]

He had a thickened posterior urethra valve at birth which caused damage to developing kidneys and bladder.

[Carbonomega in reply to MatrixMatriarch]

my son is going on 4 years old and I am just curious… does your son have to use a catheter? They are introducing this a few times a day now.

[MatrixMatriarch in reply to Carbonomega]

We did overnight foley catheterization for about a year but ultimately we decided to not cath. It is a hard decision. He is able to void. Things can always change. We might revisit it of anything changes but for now he is not having any UTIs and bladder/kidney disease is stable.

[Quamel_Mom]

Hey there, when my son was in stage 3 the doctors were keeping an eye on his electrolytes. And monitoring all bloodwork levels. Best advice is stay strong and keep a journal and write down whatever questions that comes to mind. Because your mind be in overload, so many things you want to ask but do not know where to begin. So when you go to the doctor appointment you can ask whatever questions you may have. My son journey began at age 2 , and received his transplant at age 5. It’s hard but do not feel as if you’re alone. Whenever you need to talk we are here for you. Blessings are going up for your daughter and family. You got this mom ! Please keep us posted on how your daughter doing.

[Otterlover47 in reply to Quamel_Mom]

Ypur response touched me! It actually had me crying (in a good way! You were right there are so many questions that I have. I think writing them down taking a journal book with me to the doctors appointment is great. We see her doctor Monday afternoon. My mind has been spinning definitely with overload from everything that I am trying to learn about her diagnosis and the best way that I can support her. I have definitely felt those moments of feeling alone and nobody understanding. It is nice to know that there is a community of moms that have gone through their journey with this ! I know all of ours are not the same however it’s nice to know that we are here for each other.

Your son seems so young compared to my daughter and sorry that you had to go through that. How is he doing now that he has had his transplant?

[Quamel_Mom]

Sorry to make you cry. However I understand because I have been there and still continue to be. It’s not easy being a caregiver and a parent at the same time. At the beginning of our journey this platform was not here , so I am glad that this was created it was desperately needed. So we all can be here for one another. Since transplant he has been doing great.

[Benjamin124]

I'm sorry to hear about your daughter's diagnosis.

When discussing stage 3 CKD with the doctor, it's important to ask about medication options, dietary changes and lifestyle adjustments to slow down progression. Also, inquire about monitoring kidney function regularly and any potential referrals to a nephrologist for specialized care.

[Otterlover47 in reply to Benjamin124]

Thank you for the advice all of it helps. she is connected with a nephrologist she was really sick in September and was hospitalized for five days during that time that is when we received the diagnosis

[tonyng42 in reply to Benjamin124]

this is great advice. I have been at stage 3 for over 10 years and at 59 yo (GFR was at 44 before meds, but now GFR at 53 so 3a). Follow the nephrologist’s advice. Change of diet (no / low sodium food, more veggies, drastic reduction of red meat or meat in general) has helped. Also, meds (Losartan) to maintain my blood pressure has done wonders (I monitor this daily). I also take farxiga, and supplements such as D and B12, but I take the full advice of my nephrologist.

Best of luck to your daughter.

[Otterlover47 in reply to tonyng42]

Thank you for the advice and sharing your journey!! That is so wonderful that your gfr went up. I wish you the best of luck on your journey

[MamaV80 in reply to Otterlover47]

Hello - how is your daughter doing ? My daughter has stage 2 CKD it’s stable f or the moment but she is only 6

[Otterlover47 in reply to MamaV80]

I’m so sorry to hear your daughter has Stage 2. She is so young -I can only imagine what you are going through. She is still in stage 3. Now has an additional diagnosis of epilepsy.

[MamaV80 in reply to Otterlover47]

Im so sorry - how was this triggered? Is there a possible link with CKD ? My daughter has been stage 2 for 2 years - I’m praying that she will remain stable for a long as possible - I understand that puberty can be very hard on kidneys when one has CKD - so let’s see what happens then …

[Otterlover47 in reply to MamaV80]

I’m really not sure how it was triggered. It will be interesting to see if it’s connected

[Olena1986]

Are you still in stage 3? And do you take any medication?

[Otterlover47 in reply to Olena1986]

yes. Still stage 3. No medication yet

[Olena1986]

We are in the 2nd stage for about 2-3 months. How long have you been in stage 2?

[Otterlover47 in reply to Olena1986]

Stage 3 for a couple months now

[MamaV80]

my daughter has been in stage 2 since 2 years so still stable for now - biggest hurdle will be puberty as that’s when it can have impact on kidneys