The Last Resort (Heart Transplant)
As I mentioned in the narrative, many people believe that a transplant is a simple fix for severe congenital heart disease, but it’s not. A heart transplant is many things, but quick and easy don’t make the list.
According to Donor Alliance, “There are currently more than 100,000 people in the U.S. waiting for organ transplants. Each year, approximately 6,000 people die waiting for an organ transplant that would have given them a second chance at life with their families. In addition, each year hundreds of thousands of people benefit from donated tissue that is used for life-saving and reconstructive purposes.” Liam could have easily been one of those 6000 in 2003 and I have a friend whose son just had his transplant this spring after a thirteen-month wait.
Transplant is not quick, and to top it off, you are waiting for another person to die. Sometimes that person is a small child or newborn baby. Organ transplant is not easy. It’s also not easy to get “on” the list. A person has to be just sick enough to be dying but not so sick that he can’t survive the transplant itself. It is a strange limbo that has strict rules about behavior and proximately to the hospital, which takes many families far from home and their support systems to wait for something that many never happen. Dr. Shelley Miyamoto at The Children’s Hospital Colorado told me, “A transplant is just exchanging one disease for another.” Transplant is not easy. The following risks follow transplant recipients through their lives:
- Incredibly expensive anti-reject medication and other medications to keep the body’s compromised immune system in check.
- Frequent hospitalization for infection and complications.
- Increased risk of cancer from the anti-rejection medication.
- Organ rejection itself.
- Social isolation due to health concerns.
- The emotional trauma of coming so close to death and owing one’s life to another’s passing.
- Guilt for requiring so much emotional and financial support from family and loved ones.
Transplant is not easy. It is an altered state and a last resort. It also requires more people to join the donor pool by registering to be organ donors. Even if a recipient is fortunate enough to find a good match, the risks that follow the person through life are daunting. There is a better way, but it is found in technology and the future.
Cardiac assist devices and mechanical hearts are not where they need to be to replace organ donation. Even if they were, kidney, lung, liver and other tissue donation is still necessary. But there is hope through stem cell research where the patient’s own stem cells can be grafted to valves, pumps, and other artificial devices to one day eliminate rejection and dependence on death to save life. The Children’s Heart Foundation and the National Institute of Health fund this kind of research that may one day save Liam and countless other children and adults with not only CHD but adult onset cardiovascular disease.
Please support NIH funding by supporting politicians who support science and research. Please support the Children’s Heart Foundation and make an investment in research that saves lives and preserves hope. And until we get to the point where we have viable mechanical alternatives, please make sure you’ve signed your organ donor card.