Updated: Jun 1
Written by Zoe Engels, Contributing Writer and Editor
Casey Rogovin, one of the original members of SODA at Washington University in St. Louis, is no stranger to the importance of organ donation and the uncertainty that comes with waiting for a transplant. Her dad, Robert Rogovin, is among the approximately 92,000 people in the United States currently on the waiting list for a kidney.
According to the American Kidney Fund, although factors such as availability and match compatibility are at play, most people on the list wait an average of three to five years for a kidney.
Robert, who received a liver transplant in 2009, shares his health journey with SODA and describes what it’s like to find himself once again waiting for a transplant.
How To Help Robert
If you are interested in helping Robert as a potential living kidney donor, potential donors should:
Come 2009, when Robert learned he needed a liver transplant, he’d had hepatitis C for nearly forty years. But for many of those years, he didn’t know that’s what it was and knew only that his liver functions were elevated. As his liver functions grew more elevated, he had a liver biopsy, which his daughter, Casey, describes as actually scaring his doctor, Ira Jacobson, who said that Robert’s liver “flew into pieces” when he touched it during the biopsy, an indication of heavy damage.
Treatments began. Robert had one or two chemo embolizations over time and was ultimately given Interferon treatment to clear, successfully, the hepatitis C from his blood in preparation for a liver transplant, though the Interferon itself gave him flu-like symptoms. He was also placed on medication to rid his blood of the toxins present due to the lack of proper liver function.
Robert spent a bit under a year on the waiting list for a liver. During that time, the Rogovin family was advised to get Robert’s assets in order in the event that he would not survive the waiting period. He and his wife began taking mandatory classes over a months-long span, learning what to expect before and after the transplant, hearing stories from surgeons, recipients, and fellow patients. Though they previously weren’t very knowledgeable about organ donation, Robert’s immediate, and extended, family members began to learn as much as possible and registered themselves as organ donors.
On the evening of January 3, 2009, Dr. Jacobson called to inform the Rogovin family that a match had been found; he advised the family to accept the liver as they wouldn’t find a better match, so they headed to the hospital immediately given that the organ was located nearby and would be retrieved by one of the surgeons at Columbia Presbyterian Hospital.
“We were all very nervous and anxious but eager to have this proceed as dad was getting sicker,” Casey said via email. “We felt incredibly lucky—but we were scared that something could happen.”
Robert had the liver transplant the following morning. Everything went smoothly.
Since his transplant, Robert, and his family have become organ donation advocates.
When Casey was a student at Washington University in St. Louis, he came to speak about his experiences. He hopes to encourage students to become donors, talk to their families and friends about organ donation, and join organ donation nonprofits such as SODA.
Robert sharing his story at a SODA at Washington University in St. Louis event in 2016.
Learn more about how you can get involved and check to see if there’s a SODA chapter on your campus at sodanational.org/students.
“The point [of the talk] was to inform young adults that when you choose to do intravenous drugs, these things can happen—ones that shape the rest of your life and send it into a totally different direction… not a healthy one,” Casey said of her dad, who has been sober for fifty-five years. “I hope they realized after hearing his story, that this is a very scary thing… and also how very lucky he was and is. He is a miracle man for sure. We hope, too, that the students understood the importance of being an organ donor through his story.”
His family calls Robert a “miracle man” because he has survived many difficult ailments while on anti-rejection medications that reduce one’s ability to fight infections. In 2015, he learned he had prostate cancer, which was successfully removed. In 2017, he was diagnosed with the most aggressive, but also the most curable, form of leukemia, acute promyelocytic leukemia. Robert became gravely ill suddenly (just three weeks prior, he’d had blood work that came back great) and was rushed to the hospital where his family says he “spent thirty days in treatment, survived, and thrived.” He went on to receive approximately eight months of chemotherapy as an outpatient.
Upon the completion of his treatment, Robert’s family surprised him with a trip to Nashville, TN, to enjoy quality time together and the music they love. Casey and Sara Miller, SODA’s founder, surprised them by joining the trip from Washington University in St. Louis.
Since his liver transplant, Robert has also had many skin cancers along with tooth and gum issues, resulting in six teeth being pulled. Doctors say that many of these issues are due to the weaknesses caused by the anti-rejection medication that he must take twice a day, everyday.
“Most people are amazed that I have survived and in fact thrived,” Robert said via email. “The liver transplant was one major thing, but then the subsequent cancers, [too]. … It’s hard for most people to appreciate the difficulties that I have endured.”
Waiting for a Kidney
Now, Robert is experiencing kidney failure. Anti-rejection medications can cause serious kidney damage; after a health scare in 2022 when Robert had two kidney stones that lead to a septic infection, his kidneys have struggled and suffered significantly. Without a new kidney, his family has been told that he will need to go on dialysis, which they are trying to avoid for as long as possible due to the negative physical and lifestyle toll it can have and because it would move Robert further down on the waitlist for a kidney. The family was told the wait list is seven to ten years, so they are now in the process of looking for a live donor.
As Robert currently waits for a kidney, his mindset is different from what it was when he waited for a liver fourteen years ago.
“My first time [on a transplant waitlist] was very difficult in coming to terms with my own mortality,” Robert shared. “I felt that I was not in control of my situation and it was left up to fate on whether or not I would ever get an organ, a liver—which I was fortunate enough to get—and whether or not I would survive the transplant, though my doctors were optimistic that I would. Thinking back, at times I felt very alone then and anxious about my future. Today, having gone through so much prior to this. I have a somewhat different attitude.
He added, “I feel that if I am lucky enough to get a kidney, I will definitely survive the operation and be able to handle the challenges that I’ll surely face subsequently. I do feel that it is left up to fate on whether I will ever get a kidney or not, [but] I don’t feel alone or anxious now. I feel much stronger emotionally now, than I did then.”