The end of August brought me to NYC to speak at a pediatric nephrology conference and during my short presentation (part of a group of three of us, my lovely friends Michele, and Kirsten, other ARPKD Mommas) I covered all of the other specialists we see or have over the years. I found my speaking notes and I am honestly a little stunned about the numbers.
- 7 pediatric nephrologists
- 2 hepatologists
- 6 surgeons
- 8 speech therapists
- 3 physical therapists
- 6 occupational therapists
- 4 regular lab techs
- 25 miscellaneous techs/nurses
- 1 childlife specialist
- 1 nutritionist
- 8 transplant nurses
- 2 psychiatrists
- 1 play therapist
- 1 dermatologist
- 1 insurance policy
- 3 case managers
- 2 secondary insurance policies
- 5 pharmacies
That’s the list I can think of now. The list shows no signs of letting up. I gladly manage the people on this list for the sake of my kids. Gladly. But the systems in place fight against me and other special needs caregivers. Maybe one day I will list all the annoyances about the systems in place.
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