Introduction

[KidneyKommando]

Hi everyone! My daughter had Wilm's Tumor at 13 months and then was diagnosed with kidney disease a year later. She had a kidney transplant, receiving her dad's kidney at age 11. She is now 18 years old and just started her freshman year of college.

[KelliC_NKF]

Welcome and thanks for sharing your story! Wonderful to hear she is doing well and off to college!

[AHP2018 NKF Ambassador]

Hello! Thank you for sharing. How have you transitioned your daughter's medical care from you overseeing it at home to her taking care of herself at college? What has worked for her (and you!)? Do you worry about her taking her meds? Does she use any sort of app or alarm system on her phone to remember to take her meds? My daughter will go to college in 6 years and it terrifies me! I would love advice...

[KidneyKommando NKF Ambassador in reply to AHP2018]

It has actually worked very well for us, and I feel (surprisingly) very comfortable with Hannah managing her meds on her own. What helped the most I think are 2 things...Hannah has been taking medicine since she was about 13 months old, so it has always been a way of life for her and is more of a routine than anything. The other thing is that her nephrologist's office started working with us both about the time she was 15 or 16, working to transition her medicine over so it is her responsibility (I was very much in control of it all and it's a big deal that they have some control and responsibility and we learn to let that go). They would ask her each visit what medicines she takes, when she takes them, and in what doses. It eventually got to the point that I often couldn't remember the exact information because she was handling it. I still do the refills because of paying for it, but she takes care of everything else and has done fantastic! So, I would definitely suggest starting to transition responsibility to your daughter early where you can still keep an eye on her and make sure she is handling it well. I told Hannah I was going to check in with her every day about her meds, but I think that lasted MAYBE 2 weeks. She made her own schedule on when to take them (like between early classes in the morning), and she has been fine. One thing I have found with her being in college is that she chose to stay close to home but still live on campus. That has been a lifesaver. She has been sick literally since day 1 with different (albeit pretty small) illnesses, and one virus that required hospitalization. If she were an hour and a half a way or a state away there is no way I would feel comfortable with her health during this transition. I was lucky because she didn't want that, but it would have been a tough decision. She knows her body well so she knows when to call me and we have a great system worked out. Your daughter will do just fine...

[AHP2018 NKF Ambassador in reply to KidneyKommando]

Thank you. Yes, I started asking my daughter to text me each time she takes her am meds at school. This has been working well. I also ask her to identify each medication and why she takes it, and to fill her pill box on Sunday nights for the week. It's hard to imagine that one day she won't be here for me to check up on, though, but you are right - it will probably happen gradually and she will take it all on by herself. Good point about going to college far away, though. I hadn't thought about that and you are right - I will feel better with her nearby. Thank you!