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      Colleen Steele

      If you are an adult who was diagnosed as a child, or a caregiver who has helped a transition someone from pediatric to adult care, how did the process go for you? I’m referring to specifically to care at home. In what ways did you start to take over more of your care and how did you feel about taking a more active role?

      My son was 8 when he was diagnosed and it didn’t take long for him to have learned how to mix and change his Flolan pump, simply by watching us. It was good that he knew how in case of an emergency, but his dad and I continued to take on the responsibility. What he could do, and often had to do on his own, was trouble shoot his pump if it alarmed, especially when he was at school. I would then of course be notified.

      I’ve always set up his meds for the week and I’m guilty of still doing that for him now, but then it’s his responsibility to make sure they are taken on time.

      He was 14 when he received his transplant and it was a must that HE knew all of his meds, what they are for and when they are taken. Now that he is 20, obviously he has the dominant role in his care, but I still help him in several ways.

      What has your experience been?

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