Stages of the Transplant Process
Each transplant journey is different. Some people wait for a long period of time hoping for the day when they get the call that an organ is available. Others arrive at the transplant stage with an eligible living donor and move quickly to surgery and life with their new organ. No matter how it happens there are certain things that happen to nearly all transplant recipients. To best assist you at the stage you are in right now, we have broken down the transplant process into three stages: pre-transplant, during transplant and post-transplant. Please click on each stage to learn more.
Pre - Transplant
The pre-transplant process for children undergoing organ transplantation involves several important steps. First, a thorough evaluation is conducted to assess the child's overall health and suitability for a transplant. This includes medical tests, imaging studies, and consultations with various specialists. The child's medical history, current condition, and any existing complications are carefully considered. Additionally, the transplant team will discuss the potential risks, benefits, and alternatives with the child and their family. Financial aspects and insurance coverage are also addressed to ensure adequate support during the transplant process. If the child is deemed eligible for a transplant, they are placed on the transplant waiting list. Throughout this pre-transplant phase, close communication and coordination between the medical team, child, and their family are critical for ensuring the child's physical and emotional well-being as they prepare for the transplantation journey.
Helpful Resources:
This is not an exhaustive list. Please email us at: contact@transplantfamilies.org if you would like to add a resource to this list.
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Hospital Packing List for your stay by Pressing On
Pressing On - Hospital Packing Checklists
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What Every Parent Needs to Know: A guide when your child needs a transplant
https://optn.transplant.hrsa.gov/media/2464/weparentntk_optn.pdf
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Organ Transplants: What Every Kid Needs to Know by United Network of Organ Sharing
https://unos.org/wp-content/uploads/Brochure-113k-What-every-kid-needs-to-know.pdf
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What Every Patient Needs to Know by United Network of Organ Sharing
https://unos.org/wp-content/uploads/Brochure-113-What-every-patient-needs-to-know.pdf
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How to Find a Living Donor: Make Your Transplant Happen by United Network of Organ Sharing
https://optn.transplant.hrsa.gov/media/2267/find_a_living_donor.pdf
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Living Donation: Information You Need to Know by United Network of Organ Sharing
https://unos.org/wp-content/uploads/Brochure-107-Living-donation.pdf
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Living Donation by United Network of Organ Sharing
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Frequently Asked Questions about Multiple Listing and Waiting Time Transfer by United Network of Organ Sharing
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What I Wish I Had Known: Transplant Families Share What They Wish They Had Known Before Their Child Underwent Transplant Surgery by Starzl Network
During Transplant
Staying in the hospital during a pediatric transplant can present various challenges for both the child and their family. Firstly, the extended hospitalization period can be emotionally and physically demanding. Children may experience homesickness, anxiety, and fear due to being away from their familiar surroundings and routines. They might miss out on school, social activities, and time with friends. Family members may face significant stress, juggling responsibilities, and adjusting to the demands of the hospital environment. Secondly, the child may undergo numerous medical procedures, including frequent blood tests, medication adjustments, and monitoring. These procedures can be uncomfortable and tiring for the child, and lead to feelings of frustration or sadness. Thirdly, the risk of infections is high
during a hospital stay, requiring strict infection control measures and limited contact with others. This isolation can impact a child's social and emotional well-being. Lastly, the financial burden of prolonged hospitalization, medical expenses, and potential loss of income can add to the family's challenges. However, with the support of healthcare professionals, social workers, and loved ones, families can navigate these challenges and provide the best possible care for the child during their hospital stay.
The patients and families at Transplant Families have been there and are here to help! During a hospital stay after a pediatric transplant, patients and families may benefit from various resources to support them during this challenging time. Please take a look at the following resources we have gathered that can help make an extended hospital stay following a transplant just a little bit better. We encourage you to lean on all of these resources to try to make the time spent in the hospital as tolerable as possible:
Post - Transplant
After a pediatric transplant, children may face various challenges during their post-transplant life. First, they must follow a strict medication regimen to prevent organ rejection and manage potential side effects. This can be challenging, as medications may have unpleasant side effects and require strict timing and dosage. Additionally, regular medical check-ups, lab tests, and follow-up appointments become routine to monitor the transplanted organ's function and overall health. Secondly, the child may experience physical limitations and fatigue as they recover from the transplant surgery. They may need to engage in rehabilitation programs to regain strength, mobility, and stamina. Adjusting to the new organ and its requirements can
take time. Thirdly, maintaining a healthy lifestyle becomes crucial. Children must adopt a nutritious diet, engage in appropriate physical activity, and avoid activities or substances that can harm the transplanted organ. Finally, emotional and psychological adjustments are necessary. Children may face anxiety, fear of rejection, or concerns about their future health. Regular support from healthcare professionals, mental health providers, and their support system is vital in helping children overcome these challenges and lead fulfilling lives post-transplant.
Helpful Resources:
This is not an exhaustive list. Please email us at: contact@transplantfamilies.org if you would like to add a resource to this list.
Immunosuppression FAQ by the Starzl Network
https://starzlnetwork.org/wp-content/uploads/2020/12/Immunosuppression-FAQ.pdf
Medication Adherence Information for Teens by the Starzl Network
https://starzlnetwork.org/wp-content/uploads/2020/12/Medication-Adherence-for-Teens.pdf
Immunosuppression Medication Interactions by the Starzl Network
https://starzlnetwork.org/wp-content/uploads/2020/12/Medication-Interactions.pdf
Psychosocial Care: Emotional and Behavioral Needs by Developmental Age by Starzl Network
https://starzlnetwork.org/wp-content/uploads/2020/12/Psychosocial-Care.pdf
Rejection FAQ: Frequently Asked Questions About Rejection by Starzl Network
https://starzlnetwork.org/wp-content/uploads/2020/12/Rejection-FAQ.pdf
School Resource Packet for Transplant Families: A Comprehensive Guide for Educational Resources by Starzl Network
https://starzlnetwork.org/wp-content/uploads/2020/12/School-Resource-Packet.pdf
It’s important to remember that pediatric transplant is a treatment and not a cure. There are a number of excellent organizations who focus on making each pediatric transplant successful. We encourage you to take a look at the websites of the following organizations.
Helpful Organizations
This is not an exhaustive list. Please email us at: contact@transplantfamilies.org if you would like to add a resource to this list.
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American Society of Transplantation / Power2Save: https://www.myast.org/
Power2Save is on a mission to prove that everyone has the power to save a life by supporting transplant research, advocating for public health, and promoting organ donation. Anyone has the power—whether you are an organ donor, family or friend of someone who needs an organ or has donated one, a medical professional, or an individual or organization who simply believes in making a difference—we all play a part. The Power2Save initiative reaches thousands of recipient families, the medical community, individual advocates and registered donors. Companies who support Power2Save programming allow AST to continue to educate the public on the importance of funding transplant research, donating organs and advocating for recipient health.
Children's Organ Transplant Association (COTA): https://cota.org/
Children’s Organ Transplant Association helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.
Organ Procurement Transplant Network (OPTN): https://optn.transplant.hrsa.gov/
The Organ Procurement and Transplantation Network (OPTN) is a unique public-private partnership that links all professionals involved in the U.S. donation and transplantation system. Also crucial to the system are individuals who sign organ donor cards, people who comment on policy proposals and countless volunteers who support donation and transplantation, among many others. A driving force of the OPTN is to improve the U.S. system so that more life-saving organs are available for transplant. Patient safety is at the forefront of activities at transplant hospitals, organ procurement organizations (OPOs) and labs.
Scientific Registry of Transplant Recipients (SRTR): https://www.srtr.org/
SRTR reports on transplant programs and on organ procurement organizations. The OPO reports include detailed information about the donation process at each OPO in the country.
Transplant Life Foundation: www.transplantlifefoundation.org
Serve transplant recipients, donor families, living donors, future recipients, and others in the Donation and Transplant community with programs and educational materials to enhance and improve their lives.
Transplant Living Today: https://transplantliving.org/
Transplant Living Today provides information, resources and support about Transplant Living in our world today.
United Network of Organ Sharing: www.unos.org
Our mission is to unite and strengthen the donation and transplant community to save lives.