This morning, my mother texted me "guess what?!" And replied with saying that my older brother was diagnosed with Renal Tubular Acidosis. I know what the disease is, but considering he has other special needs (has spastic cerebral palsy and dystonia), I'm concerned about how my parents are going to handle this. He isn't able to go on a renal diet due to his particular palet (he does try foods though, which is a good step!), and he already takes many medications. He's been referred to a nephrologist from his urologist, and my mom is waiting to make an appointment for him. I wish I could help, but we have different insurances so he'll be seeing a completely different team of nephrologists, and long term if he goes into kidney failure, I'm not optimistic that he'll have options. Any support would be great; I'm so used to being the patient, that being the family member is a whole new type of stress..
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Ladybug_05
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9 Replies
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Actually, I believe you'll be terrific with the support you can provide, especially for your parents and extended family. You always can count on the folks here in this community for support. Keep everyone updated.
Everyrhing you’ve learned about managing CKD will certainly be a great help for both your brother and your mother. Plus, just being there fir them both is invaluable!
You are a great advocate and warrior and I know you will be a big help to your family because of your strength with your own battles. Your brother will sense your strength.
We’re all thinking of you and behind you. Your positive attitude and openness to just be there for your brother emotionally is exactly the perfect thing you can do.
All of your experience can help your Mom ask the right questions for your brother when they see the nephrologist. Knowledge about CKD, that you have, can really help your whole family with this devastating diagnosis. Be strong....prayers!
I am so glad you are doing better!!! It seems like it just takes time. After a transplant I think it is a real shock to your body......and then there are the meds. I know I don't need to tell you that.
I pray that it is a temporary thing for your brother and the medial team will make it all - right.
Thank you everyone! I did some research, and the type of CKD that he was diagnosed with (Renal Tubular Acidosis) can be a temporary condition caused by having a blocked ureter! It makes sense, since he's been having kidney stones and a few months prior he was hospitalized with sepsis due to kidney stones blocking his ureter and causing a kidney infection. I'm hopeful that this is temporary and his medical team will be able to get him back on track soon!
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