‘Get Out & Do’ Is Transplant Patient’s Motto
It was Thanksgiving Day 2012 when David Weber left University of Cincinnati Medical Center following a successful kidney transplant. But the journey to that day was a long one.
The now 36-year-old from Southeast Indiana was attending Purdue University in his 20s when he first became ill.
A number of symptoms in the middle of flu season masked what he was ultimately diagnosed with in 2005: IgA nephropathy. The kidney disorder is marked by a buildup of antibodies, called IgA, in the kidney tissue. When too much IgA is present in the kidneys, the organs become inflamed and damaged.
Aggressive therapy to treat the disease wiped out Weber’s immune system. He developed histoplasmosis, shingles and pneumonia and ended up in the emergency room at UC Medical Center, which ultimately led him to the UC Health nephrology and transplant teams.
In 2009, Weber’s kidneys failed and he started dialysis while being worked up for transplant. As luck would have it, his sister was an identical match and on March 31, 2010, Weber received one of her kidneys.
His UC Health transplant nephrologist, Amit Govil, MD, says that such a well matched kidney is expected to have an excellent outcome. However, Weber experienced a very rapid and aggressive recurrence of his IgA nephropathy in his transplanted kidney.
“We tried all forms of interventions including plasma exchange and some novel immune-suppressive regimes to slow down the rapid deterioration of the kidney function and progression of proteinuria. But this was one of the most aggressive and destructive recurrence of IgA nephropathy that we had come across,” says Govil, UC professor of medicine.
“For the longest time everyone had told me how great I would feel after the transplant and how much better life would be. And it wasn’t,” Weber says. “Every day brought new problems, or more of the same problems. And I remember thinking ‘what if this is as good as it gets?’ It was hard to stay positive, but with support from my terrific family and friends I survived it.”
Theorizing that Weber’s sister’s kidney may have been too similar, doctors suggested it be removed and that Weber go back on the transplant list. This time, he’d need a non-relative match.
“IgA nephropathy is one of the more common causes of kidney failure, and although it recurs often in the transplanted kidney, the recurrence usually does not result in the kidney transplant being lost,” says E. Steve Woodle, MD, UC Health transplant surgeon and director of solid organ transplantation for UC Health.
“David experienced a very rare complication, in that his IgA nephropathy recurrence was very severe and resulted in a rapid loss of his transplant. In hundreds of transplanted IgA patients, I have never seen this before.”
Following another eight months of dialysis, posts to Facebook seeking people willing to be donors, and handing out cards to those interested in learning more, Weber found a match in a high school friend.
He received his second kidney Nov. 19, 2012, and says he felt good waking up from the surgery.
For his second transplant, Weber was enrolled in a national, multicenter randomized clinical trial led by Woodle, professor and William A. Altemeier Chair in Surgery at UC. Called the Belatacept Early Steroid withdrawal Trial (BEST), the study sought to determine if replacing a normal regimen of antirejection medications with an FDA-approved belatacept-based regimen for post-transplant patients could prevent organ rejection without the harmful side effects posed by corticosteroids and calcineurin inhibitor (CNI) immunosuppressants.
In November 2014, Weber became the first patient to complete enrollment in the study. While randomized, the trial is not blinded, so both Weber and his care team knew he received the study medication. The BEST study has now completed enrollment and results will be available in May 2018.
His whole experience has left him with a new perspective on life. “I just want to go out and do and see as much as possible while I’m feeling well,” says Weber. “The time we have today is not guaranteed tomorrow.”
Weber now serves as president of UC Medical Center’s Auxiliary, a 60-year-old volunteer organization working in support of patients and families to fund equipment purchases and programmatic efforts across the hospital.
Now We Join in Celebration
As we celebrate 50 years of providing excellence in transplantation, breakthrough treatments and compassionate coordination of care to the region, we invite you to join us in a 50-day countdown to the anniversary of the first surgery that launched Cincinnati’s most comprehensive transplant program.
For more information about UC Health transplant services, please visit uchealth.com/transplant.