How Whole Health Care Guides the Living Donor Journey

Modern Family star Sarah Hyland recently went public about her struggles with kidney dysplasia (a congenital condition that causes undeveloped kidneys from birth and cysts), leading to two kidney transplants through a living donor program. After her father’s donated kidney was ultimately rejected, her brother became her second donor.

Her health journey was additionally complicated by other painful chronic conditions such as endometriosis and an abdominal hernia, which contributed to her candidly sharing how her health struggles affected her in body, mind and spirit. Bobby Nibhanupudy MD, transplant surgeon and Medical Director of the AdventHealth Abdominal Transplant Program, explains that this can be a common part of the transplant recipient process.

Guiding Younger Patients Through Kidney Transplant

“Kidney failure can hit young people very hard if they’ve had a normal life prior to that point, because it can mean a loss of freedom. Dialysis may be needed three times a week for four hours each session, and that only accomplishes 15 percent of normal kidney function. Plus, they might not be feeling well and that is hard for a young person to deal with because it can be very disruptive to life,” explains Dr. Bobby.

Dr. Bobby adds, “Living donor kidney transplants may last an average of 15 to 16 years, but younger people have stronger immune systems that try to reject the donor organ sooner. Knowing that you might get your normal life back with a kidney transplant, and then having to face organ rejection and endure a second organ transplant can also be a tremendous source of stress.”

Healing Emotionally Throughout the Transplant Process

For Hyland, she expressed that when her donated kidney from her father was rejected by her body, it felt as if she was rejecting her father personally.

“It’s common for patients that experience rejection of a living donor organ to go through that grieving process of feeling like they did something wrong. Knowing this, our team tries to prepare patients and their families emotionally in the pre-op process by communicating that even with 100 percent medication compliance, a perfect genetic match and a successful transplant procedure, there is still a five percent chance of an organ rejection episode. We do everything possible to reduce this risk, and tell patients that if a rejection occurs, it’s not their fault and it doesn’t mean they are rejecting the donor; it’s just that their immune system is strong,” Dr. Bobby shares.

In addition, the AdventHealth transplant teams work hard to meet the physical, emotional and spiritual needs of each organ donor and recipient throughout the lifelong transplant journey.

“Each living donor and recipient have separate treatment teams, including a designated social worker who completes a psychosocial evaluation to ensure that they are mentally prepared and engaged in the process for the right reasons. We’re looking or recipients to see this as a “gift” that they will have to take care of for the rest of their life. It’s a commitment that everyone makes, and we work hard to help each patient along the way with resources for the lifestyle modifications like diet and exercise, as well as financial commitments that they’ll have to make. We have a very good patient assistance fund to help those who need it after their transplant,” explains Dr. Bobby.

Trusting an Expert Transplant Team

After performing nearly 1,000 transplants, Dr. Bobby has an unique perspective about organ donation. “Patients who have had an organ transplant often live very sick throughout organ failure, and then feel as if they get a gift of life when they return to normal after the transplant,” he says.

In most cases with a living donor transplant, patients have a very good chance of this remarkable recovery.

Dr. Bobby advises, “Living donor kidney transplantation offers the most advantages for a kidney transplant. It’s the fastest way, as patients don’t have to wait on the transplant list, which can take months. It also reduces the risk of rejection because the kidney from the living donor is healthier with no inflammatory damage and it is immediately transplanted into the recipient. Compared to a deceased donor organ, living donor kidneys last five years longer on average.”

A full and quick recovery for the donor is also a priority of Dr. Bobby’s transplant team. He adds, “We pioneered the single incision laparoscopic approach to remove a living donor’s kidney. Our surgeons make a very small incision through the belly button and when the procedure is done there is only a two to three centimeter marking. This makes a big difference in reducing the healing time and scar for our donors.”

After the kidney is removed, living donors can expect a two-day hospital stay with a two week total recovery time until they are fully healed. “Some pain is normal for the first few days. They can return to their normal lives relatively quickly and the risks of long-term complications is very low,” Dr. Bobby explains.

For the recipient, the living donor’s kidney is most often transplanted within one hour of removal and once surgically placed, begins to work immediately. “It’s an amazing thing to witness time and time again,” says Dr. Bobby.

Recovery for the donor is a lifelong journey. After three to four days in the hospital, the recipient must also learn how to reduce risks of rejection by taking appropriate medications and modifying lifestyle to optimize the health of their new gift.

Dr. Bobby explains, “We stay connected to our transplant patients for life, as we monitor their whole health regularly after the procedure and coordinate with their other providers to ensure that we protect their new kidney and overall health, too.”

He concludes, “We get to see most patients transform their lives, from a very sick place to returning to a very high quality of life. And we couldn’t do this without the altruistic organ donors. If you haven’t registered to be an organ donor, or are faced with the opportunity to be a living donor to someone in need, it’s powerful to know that you can save a life.”

Learn more about becoming an organ donor today.