Transplant keyI think the best part has just been getting to live each day to the fullest. I do everything I can and try not to look back at any regrets.

Laura, 14, Lung transplant recipient

 

The Transplant Experience Journal is a collection of stories and personal experiences from patients and families about what it has been like to have a heart, lung, liver, kidney or intestine and multivisceral transplant.

While it is common to feel some emotional discomfort associated with reading the stories of children and parents describing their experiences with transplant, we hope that families may learn from the stories of others facing similar experiences.

Stories are color-coded by solid-organ transplant:

  • Heart stories appear in red
  • Lung stories in blue
  • Liver stories in green
  • Kidney stories in yellow
  • Intestine & Multivisceral stories in purple

Please visit the Glossary to read definitions for words in bold. Visit our Resources page to learn more about family and clinician recommended websites on pediatric solid organ transplant.

Video Interviews:

Child & Adolescent Stories:

My advice is, don’t be so hesitant to consider getting a transplant. Yes, it can be a very overwhelming, scary thing, but I would not trade what I’ve been through for anything.

Johnny, 28, Heart transplant recipient

Caregiver Stories:

Just trust your medical team, ask a lot of questions. They’ll answer every question for you. And learn! Learn as much as you can, but learn from the correct source. Learn from your team, read the meds and know what they’re for…And that’s how I get through it – I ask a lot of questions.

Mother of 5-year-old Noah, Liver transplant recipient

Clinicians Insights:

I think the most important thing is to take your cue from the child, and they will often have their own questions, and when they stop asking, I usually stop telling. They often know how much they want to know.

Elizabeth Blume, MD, Medical Director, Heart Transplant Program

A group of parents and health care providers has reviewed all of these contributions for appropriateness. This journal was created by the Boston Children’s Hospital Department of Psychiatry and the Pediatric Transplant Center (PTC). Selected video excerpts from “Sharing the Experience: The Journey to Your New Liver and Beyond,” created by the University of California Los Angeles (UCLA) Pediatric Liver Transplant Program, were shared through collaboration with the UCLA Medical Center.

Acknowledgements

Editor’s note: Every patient is different and discussions of alternative treatments, complications, and timelines may not apply to you. Some families identify medications and treatments that work well for them. The Experience Journals do not endorse specific methods. Each individual is different, and we invite you to discuss treatments with your providers to see if they are right for you.