Dying to Live is an hour-long documentary produced and directed by John Robbins and Lance Lipman. It follows the lives of patients and donors involved in organ transplants, all of them at Piedmont Hospital in Atlanta. The title is a bit of a misnomer. Of the two donors featured, one is actually a live kidney donor who has no complications after her surgery.
The one kidney patient in the documentary, Andrew Persaud, is a re-insurance broker who has been on hemodialysis for several months. He wants to get a transplant as soon as possible. Rather than wait for a deceased donor, he conducts a search for a live donor. He has created a website AndrewNeedsAKidney to describe his situation and promote in his search. Barbara Kilgore, a teaching nurse at Emory Adventist Hospital does not know Andrew, but hears about his condition from her daughter, who is a friend of Andrew’s sister. Ms. Kilgore volunteers to get tested. She is a match and a few months later she becomes a living donor for Mr. Persaud.
Andrew Persaud and Barbara Kilgore. Video still from Dying to Live
The other three patients featured in the movie are on the liver waiting list. Their experience is much more desperate than that of Mr. Persaud. As mentioned in many previous blog posts, patients with end-stage kidney disease (ESRD), can be kept alive mechanically through dialysis. Since kidney patients can survive several years on dialysis, the distribution of organs is weighted mostly by time on the list and difficulty of finding a match.
The situation is quite different for liver patients. There is no mechanical therapy available for liver failure. The only treatment is transplant. There is also a severe shortage of transplantable livers. Thus, rather than distributing livers based on how long a patient has been waiting, they are distributed to the sickest patients first. The United Network for Organ Sharing (UNOS) uses a measure called the MELD score (model for end-stage liver disease) to prioritize patients who are likely to die soon without an immediate transplant.
In a poignant scene shot during a transplant support group meeting sponsored by Piedmont Hospital, a patient candidly talks about his desire to get sicker faster so that he can move to the top of the waiting list and get a transplant sooner (or die sooner if an organ isn’t found).
One of the liver patients is Kevin Ferwerda. His condition is serious and his health is declining. He has been on the waiting list for several years but he is not yet near death, so does not qualify for an immediate transplant. Instead, he continues to wait while he struggles with recurring blockage of his bile duct that results in serious infections that require frequent hospital stays. When he is sick, his MELD score goes up and he moves up the list. As the doctors treat him, he gets better, and he moves down the list. This cycle puts a lot of stress on him both medically and emotionally. You can see and hear the tension as he and his wife Alyson discuss their life together raising three young children.
Kevin and Alyson Ferwerda. Video still from Dying to Live
Because of the large number of family members and friends interviewed, it is often hard to keep track of which story goes with which patient. But overall the movie does an excellent job of describing the ups and downs experienced by everyone who is waiting and hoping for an organ or agonizing over the death of a loved one. The film also does a good job of confronting and dispelling some common misconceptions family members have about consenting to organ donation. The movie made its debut at the Hawaii International Film Festival in 2010 and later that year won an award at the Los Angeles Film Festival.
Note: Dying To Live is available for $248 at the Icarus Films website, a price that includes public performance and broadcast rights. However, if you contact the firm via email, you can purchase a copy of the film for individual use for $39 plus shipping. Unfortunately, this movie isn’t available for sale at Amazon or for rent on Netflix.