What do clinic visits look like for us?

The short answer: Tons of walking around.

The long answer: We get checked into Family House after a long drive to San Francisco with a fussy toddler. Then we unload the car with all of her medical supplies and then have to drive to park it. Depending on the month, we either have lab work the day before or the morning of clinics. Lily has a port so we have to go to the Infusion Center to access it. During clinics, we see our primary nephrologist, dialysis nurse practitioner, dietician, and social worker. We measure Lily and discuss medication changes, etc. It turns into a very stressful day. Whichever night we’re here, I get food at the food trucks across the street from Family House and get Lily all hooked up to dialysis like normal from here. She is so excited to be in the same room as mom so that usually means she goes to bed very late. Then, after clinics, we pack it all up and drive home. Lily loves home so clinic days are hard on her to be so cooped up and they’re hard on me to manage it all alone. Clinics are going to be a part of our life forever although the frequency will change the further from transplant we get.