Welcome the PSC Mami podcast project. A collection of stories at the intersection of PSC and Parenthood. We explore the questions, possibilities and challenges of people living with Primary Sclerosing Cholangitis and how it reshapes our expectations of parenthood.
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
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
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
Pregnancy and motherhood after organ transplant
A group where pre and post-transplant recipients desiring to become parents (either biologically or otherwise) can find each other, share their stories and offer information and hope. FB group
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
Surrogate.com Finding a surrogate | Surrogacy laws by state
Creativefamilyconnections.com US Surrogacy Law Map
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)
Our interviewee, Heather, shared documents she received from Baylor Scott & White Child Life about how to discuss serious illness with children.