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May 10, 2024 · Over 1,800 kids received a life-saving organ transplant in 2022. With your help, we provide the assistance that children and their families need to thrive throughout their transplant journey. A newly transplanted organ is not a cure, but is the beginning to a new survival journey.
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- PEDIATRIC TO ADULT CARE TRANSITION (PACT) SUPPORT
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- Our Team
Dr. Carol Ann Tonn Interim Executive Director
- families connect
- A Guide When Your Child Needs A Transplant
- Before and During The Transplant
- Caring For Your Family and Yourself
- After The Transplant
- Acronyms and Terms
Dear Parents, When you get the news that your child needs an organ transplant, you may react with shock or surprise. Dealing with a child’s sudden or chronic illness can be difficult for any family. You will have many questions, and you may not know where to find answers. The most important thing to know is that you are not alone. In fact, we want t...
The transplant process
Your child needs a transplant. What now? The path to organ transplantation is a journey. Your family’s transplant journey may begin when your doctor tells you that your child needs an organ transplant, or when you find out that your child suffers from end-stage organ disease. There are seven basic steps in the process before and during the transplant. The process continues after the transplant, which we cover in Section 2. 1. Find a transplant hospital 2. Get to know your transplant team 3. Tr...
Find a transplant hospital
A transplant hospital is a hospital with health care providers who specialize in all aspects of transplant medicine. All transplant hospitals in the United States are part of the OPTN. Not all hospitals perform transplants and not all transplant hospitals do pediatric transplants. Your child’s doctor can refer you to a transplant hospital that: 1. Specializes in your child’s medical condition, 2. Is most conveniently located for your child’s and family’s needs 3. Will work with your insurance...
Get to know your transplant team
The transplant team will oversee your child’s care. Team members will help you take care of your child’s health issues, identify and create your support system, and work on your financial plan. Each transplant hospital is different, and so are the team members. These are some of the roles that you may find: Transplant coordinator 1. Assists and guides you and your family through the transplant process 2. At most hospitals, is your family’s point-person 3. Helps you meet requirements to add your...
Parent toolkit
A parent is the foundation of any family. Balance the needs of your children with your own needs, and be sure to take care of yourself so you can be there for them. Being in a constant state of crisis, even for a short time, can make you less able to support your family. If you spend your time worrying about the “what-ifs,” it may be tougher to deal with issues happening right now. Parenting can be a challenge even with healthy children, so having a child who needs a transplant can add extra...
Explaining the transplant process and deceased donation to your children
Your child will probably have a lot of feelings about the upcoming surgery. Children may feel anxious or angry about so many doctors’ visits, lab tests, and side effects that other children do not have to face. They may show frustration with their health limits and with the need to wait for transplant. To help explain the process and why many patients have to wait for a transplant, read What Every Kid Needs to Know with your young children. Visit unos.dokshop.com/to access the booklet and to...
Financing your child’s transplant
Thinking about paying for a transplant and all of the costs involved can raise many questions and concerns for your family. Your financial coordinator or social worker can help you create a financial plan. If living organ donation is in your child’s future, there are programs to help pay for the living organ donor’s expenses. Your transplant team can tell you more about those groups. What follows are some common options to pay for transplant expenses. Most families use more than one funding sou...
Follow-up care and labs
Your child will have routine check-ups, labs, and procedures to be sure that they are healthy and that the transplanted organ is working well. Most patients are followed very closely in the first few weeks after transplant. Over time, as your child recuperates and the transplanted organ is working well, this monitoring decreases. For many patients, after a couple of years, the transplant team requests that labs be obtained every month or so and that your child have a clinic visit every six to...
Medical ID tag
You may think about getting your child a medical ID tag. They often come as bracelets or necklaces. Bracelets may be a better option for younger children. The tag should contain the child’s name, diagnosis (including what organ the child received), and contact information for you or your transplant hospital. Smartphones may have a medical ID feature. You will need to update the information if anything changes.
Medications
Most patients are prescribed one to three medications to suppress the immune system so that the body will not reject the transplanted organ. After transplant, you and your child will learn much more about these medications. Transplant hospitals usually provide a discharge manual and education to explain why these drugs are prescribed, how they work, and what side effects a patient may have. Medications may be needed to support the transplanted organ. After a heart transplant, some patients ma...
Atrophy - The reduction in size of cell, organ or tissue after reaching its normal mature growth. Biopsy- The removal of cells or tissues from a living body for medical examination. CT scan- A procedure using a computer linked to an X-ray machine to make a series of 3-D images of areas inside the body. Immunosuppressants- Drugs or medications that ...
A bone marrow transplant (BMT) is a treatment for children with certain types of cancer or other diseases. The goal of BMT is to replace a child's diseased bone marrow with healthy bone marrow.
Heart transplants are recommended for children who have serious heart problems. These children are not able to live without having their heart replaced. Illnesses that affect the heart in this way include complex congenital heart disease, present at birth. They also include heart muscle disease (cardiomyopathy).
With transplant subspecialties in kidney, liver, intestine, heart and lung, as well as combined transplants across these disciplines, our Transplant Center provides high-quality services for every need in a child- and family-centered setting.
A kidney transplant is recommended for children who have serious kidney problems and will die without dialysis or a transplant. Some of the kidney diseases in children that may require a transplant include the following: Birth defects and heredity diseases. These are the most common causes of kidney failure in children from birth to age 4.
People also ask
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Transforming the Lives of Children Pediatric Transplant Program. Pediatric Transplant Program. Johns Hopkins Pediatric Transplant Program is dedicated to providing the best care for pediatric patients at Johns Hopkins Children’s Center and its community locations.
