support

Caringbridge.org
We found this site to be invaluable in our journey. It was very emotional and having a secure health journey focused blog space allowed us to share what was happening with loved ones without getting overwhelmed. caringbridge.org

Open Path Collective
Open Path is a collective of therapists who have generously agreed to provide in-office treatment for $30 to $50 a session (between $30 and $80 for couples and families). openpathcollective.org

PSC Partners Seeking a Cure|
This United States based support and research organization allowed us to connect with others PSCers, their caregivers, doctors and researchers in person and online. pscpartners.org

PSC Partners Seeking a Cure Canada
This is the Canadian affiliate to PSC Partners Seeking a Cure. PSC Partners Canada

 

pregnancy

Infant Risk Center
Whenever I had a question about how a medicine might affect my baby while I was pregnant or breastfeeding, I called the Infant Risk Center. They have an app but I found calling much more informative. infantrisk.com

 

transplant

International Transplant Nurses Society
ITNS has a fabulous collection of patient education brochures on post-transplant living, including ones on pregnancy, sexuality, diabetes, skin cancer and more. Many available in multiple languages. itns.org/education/patient-education

Transplant Pregnancy Registry International
This registry studies post-transplant parenthood and effects of medications on fertility and pregnancy. They track all pregnancy outcomes for mothers AND fathers who are post transplant. transplantpregnancyregistry.org

American Society of Transplantation
AST's patient information includes information packets on Parenthood After Transplantation and Liver Transplant and more at myast.org patient education

UNOS information on pregnancy post transplant transplantliving.org


Downloads

At the PSC Partners Conference in Sacramento, I co-presented the Women's Health workshop. I gave out this list of my favorite resources (some listed above) 

PSC Mami Resource page


Our interviewee, Heather, shared documents she received from Baylor Scott & White Child Life about how to discuss serious illness with children.

How do you prepare a child? Serious Illness | download

Talking with Children of different Ages and Stages about Serious Illness | download