Tabitha’s Transplant Journey
Tabitha was born on Thanksgiving in 2000, and was healthy and happy. On November 25, 2004, two days before her 4th birthday, Tabitha was diagnosed with high risk T-cell Acute Lymphoblastic Leukemia (ALL). It is an aggressive type of leukemia which affects white blood cells called T lymphocytes. Tabitha received both chemotherapy and radiation, including a medication called doxyrubicin. This drug is very effective, because it slows or stops the growth of cancer cells. Unfortunately, it also causes long term heart damage, which can show up early or even years later. Tabitha successfully completed treatment for ALL in January 2007, and appeared healthy for years.
Ten years after she was diagnosed with ALL – Almost to the day – On November 18, 2014, Tabitha was diagnosed with congestive heart failure due to dilated cardiomyopathy. Her heart had become stretched and weak, and was unable to pump effectively. As the heart contracts, it ejects blood from the two ventricles. When it relaxes, the ventricles fill with blood. The measurement of the percentage of blood pumped out of a filled ventricle with each heartbeat is referred to as the “ejection fraction.” Obviously the heart isn’t able to pump all of the blood each time, but the average ejection fraction (EF) is between 55% and 70%. When Tabitha was diagnosed with cardiomyopathy, her ejection fraction was only around 21%.
Tabitha was treated at University of Michigan Mott Children’s Hospital with numerous medications, which helped improve heart function slightly for a few years. In August 2017, we learned that after increasing to around 35%, her ejection fraction had dropped again, to about 25%. The amazing cardiologists at Cincinnati Children’s Hospital took several steps to keep Tabitha as healthy as possible. Along with adjusting her medications, she had an implantable cardioverter defibrillator (ICD) placed on April 25, 2018. An ICD is a similar to a pacemaker, and is implanted in the chest next to the heart. It monitors heart rhythms, and if it senses a dangerous rhythm, it delivers a shock. On October 12, 2018, she had a CardioMEMS placed in her pulmonary artery. This measures changes in blood pressure, and can indicate worsening heart failure before there are symptoms. The goal of the CardioMEMS is to know early when things change, so that medications can be adjusted. In early spring 2019, Tabitha’s pressure showed that her heart failure was worsening, despite adjustments in her medication.
With her heart getting weaker, Tabitha’s cardiologists decided that it was time to make a plan to treat her heart failure more aggressively. One treatment is placing a Left Ventricular Assist Device (L-VAD, or simply VAD) next to the heart. This device is connected to the heart, taking on much of the work and helping it pump more efficiently. A line is threaded to the abdomen, where it exits the body and is connected to a power source. Tabitha received her VAD on May 25, 2019 at Cincinnati Children’s Hospital. This machine has allowed her to get stronger so that she has a “bridge” to transplant. Cincinnati Children’s Hospital was unable to approve her to receive a transplant through their program, and referred her instead to Vanderbilt, in Nashville, TN. Tabitha was evaluated at Vanderbilt at the end of February 2020, and they decided to “defer” listing her. They explained that they wanted to get to know her better before doing a transplant, and they thought that it would only take around 6 months from the time they listed her until she was able to receive her gift of a heart. Because COVID-19 restrictions made it less safe for her to be seen in person, Tabitha has been checking in with the transplant team at Vanderbilt every month with virtual appointments. On July 21, 2020, Vanderbilt Hospital notified us that they have approved Tabitha for transplant. Not only that, they wanted to list her at a higher status right away.
Heart Transplants are offered based on three things: Blood type, body size, and status on the list. There are 6 statuses:
Status 1 – People who are on ECMO (extracorporeal membrane oxygenation) or have life threatening arrhythmias
Status 2 – People who have an LVAD but can’t be discharged, have a balloon pump, or a few other things Both of these statuses include people who can’t leave the hospital and therefore are higher on the list, because they need a heart sooner
Status 3 – People who have an MCSD (mechanical circulatory support device) and are having problems with it, along with a few other things
Status 4 – People who have congenital heart disease, have an LVAD and are stable to wait at home, are waiting for a second transplant, and a few other things
Status 5 – People who need more than a heart (like a heart and lungs, or heart and liver)
Status 6 – Basically everyone else
There is one other way to be listed at Status 3: All patients with an LVAD are given a 30 day discretionary period to be bumped up to status 3. Those days do not have to be consecutive, but once they are used, you don’t get more. When someone uses their discretionary period, the hope is that they will receive a transplant within those 30 days. If they don’t, they simply drop back to status 4 and continue waiting. Transplant centers typically have one person with different criteria at this status at a time. For instance, they will use the discretionary period for someone who is 5’2” and blood type B+, and another person who is 6’6” and blood type B+, at the same time, because they aren’t both eligible for the same heart. They wouldn’t use the discretionary period for two people around the same height and the same blood type at the same time, because they would be competing for the same heart. Tabitha is status 4 right now. Because of her height and blood type, they would typically estimate that her wait time would be around 6 months. However, there aren’t any other patients currently listed at Vanderbilt who have the same blood type, height, and status. Therefore, they would like to use her discretionary period right away. They didn’t do that immediately when she was listed because in addition to needing a heart, Tabitha may be slightly clumsy and has tripped on stairs twice in a month, resulting in torn ligaments in her ankle. They need her to be able to at least walk with a brace on her ankle immediately after surgery, so they wanted to wait a few weeks to give her ankle a chance to heal. She was given the “all clear” by Orthopedics about a week and a half ago, so we are waiting to see the plan regarding her status. Until then, we are waiting at home for a call to jump in the car and make the 3 hour drive to Vanderbilt.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.