Background
Zayne was born with congenital heart defects in October of 2010. None of the defects seemed to cause any problems, and she continued to look and act like a healthy child. She received a good report at her 6 month checkup, and I was told to bring her back in another 6 months. However, the 1 year cardiology checkup resulted in additional tests being ordered. After a cardiac catheterization (cath) and MRI, she was diagnosed with restrictive cardiomyopathy (RCM) at 14 months old. Zayne was closely monitored by cardiologists at Children’s Hospital Colorado and continued to grow and develop. After her 4th birthday, it became evident that her heart was failing and Zayne was listed for a heart transplant on March 19, 2015.

Zayne was transplanted on June 29, 2015. She was running 5 days after transplant and didn’t stop until April 2020 (early days of COVID pandemic) when she went into severe acute antibody-mediated rejection (AMR). Basically, her body produced antibodies to specifically attack the donor heart and cause graft failure. AMR helped pave the way for cardiac allograft vasculopathy (CAV) where heart blood vessels become blocked. CAV a progressive type of coronary artery disease – the only definitive long-term treatment for advanced CAV is re-transplantation.

Restrictive Cardiomyopathy

Pediatric RCM is a rare condition where the ventricles become stiff and do not expand. The atria becomes enlarged and blood flow to the heart will eventually be restricted. The cause is not known, and there is no cure. A heart transplant is the only option available for a failing RCM heart.

Information on RCM can be found at The Children’s Cardiomyopathy Foundation and The Cardiomyopathy Program at Children’s Hospital Colorado

If it has been a while since you studied the heart, you may want to view this diagram: Human heart diagram

Heart Transplant
A heart transplant replaces the patient’s failing heart with a donor heart. This gives the patient an opportunity to have a heart with normal blood circulation. The transplanted heart will grow, along with the patient, into adulthood. Once all is healed and medications are stabilized, there shouldn’t be any activity restrictions. Immunosuppressive medications prevent the immune system from rejecting the new heart, and must always be taken (forever). Careful monitoring of medications are needed to prevent side effects such as infection, kidney disease, cancer, and other problems.

After a patient has been evaluated and found suitable for a transplant, the pediatric patient is assigned as 1 or 4 different statuses:

Status 1A – For patients that are the sickest and are typically in the intensive-care unit or on an assist device.
Status 1B – Less sick than 1A, but still need a new heart more urgently than Status 2
Status 2 – All other patients who need a heart transplant.
Status 7 – For when patients are temporarily inactive on the waiting list. Reasons can include infections, unstable conditions, financial problems, or travel away from transplant center. Patients do not accrue time at this status, but they do not lose time already accrued.

The donor heart is matched to the recipient by urgency, blood type, size, tissue typing, and time on the list. The recipient must be available 24×7 and be able to travel to the hospital within an hour or so. A team from the recipient’s hospital will travel to the site of the donor to evaluate and retrieve the heart. A special solution cools and stops the heart and helps to preserve it. The heart is placed in a cold saline solution, and the team transports the heart back to the transplant center in an ice cooler. The patient’s chest is opened, and the patient is placed on a heart/lung bypass machine (cardiopulmonary bypass). The old heart is removed and the new heart is sewn in place. In most cases where the patient has not had prior surgery, the transplant operation may take 4 – 5 hours. The patient will be placed on a ventilator, have multiple catheters and drains, and be hooked up to monitoring equipment; many of the tubes will be removed within the first few days of surgery. If there aren’t any complications, the patient may go home in 6 – 10 days. A second heart transplant is more challenging. The chest cavity is full of scar tissue from the first surgery, so the second surgery takes longer and the patient takes longer to recover.

The transplanted heart could last 10, 20, or more years (or much less). With advances in technology and medications, it is hopeful that transplanted hearts could last for a long time.

Organ Donation
In the United States, buying and selling organs is illegal (except for research purposes). Organ donations are managed by the United Network for Organ Sharing (UNOS). UNOS collects and manages all data that pertain to the patient waiting list, organ donation and matching, and transplantation occurring on the nation’s organ transplant network.
There are five steps in the organ matching process:

An organ is donated.
Information is sent to UNOS about the organ (condition, size, blood type, …)
UNOS generates a list of potential recipients.
A computer program ranks potential candidates by geographical location, patient’s current medical status, biological profile, time spent on the waiting list, and other factors.
The transplant center is notified of an available organ.
UNOS contacts the transplant center to let them know their patient has been matched to an available organ.
The transplant center evaluates the available organ.
By policy, the transplant team has only one hour to either accept or reject the organ.
The organ is either accepted or declined by the transplant center.
If the organ is declined, then the next ranked patient is offered the organ. The process continues until a match is made.

There is a shortage of available organs for donation, and many people die each year waiting for an organ. On average, 17 people die each day because an organ was not available for transplant. The waiting list mortality rate for pediatric heart transplantation is higher than any other group.

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