Many of you, both living donors and transplant professionals alike, have shared with me your frustration, anger, and/or resignation that there isn’t enough research available about the physical and emotional impact of the living donation journey. (For those of you just getting started, you may learn this soon enough. We are a relatively new phenomenon in the world of medicine, especially living liver donors, and the frank truth is that there isn’t much empirical data to go on out there.)
That’s why I was delighted last week to find three — count ’em, three! — news items on studies that have been or are being done. Check this out:
- Dr. Hassan Ibrahim and his colleagues at the University of Minnesota have published a study on the long-term health effects of living kidney donation. Says the Star Tribune in its January 28 article, “Ibrahim and his co-authors tracked down nearly all of the 3,700 people who had donated kidneys at the university’s transplant center between 1963 and 2007. They found that the donors’ life spans, and their risk for high blood pressure, diabetes, and, most important, kidney disease were the same as or better than those of non-donors of similar age, race and gender.”
(Coincidentally, on nearly the same day as the article appeared in the Star Tribune, I saw this obituary come across the Associated Press for Juanita Smallwood Osborne, one of the world’s first living kidney donors, who donated a kidney to her son in the mid 1960s. She died last week of complications from aspiration of pneumonia, at age 88, and her one kidney was functioning well to the end.
- Two nurses at the Johns Hopkins School of Nursing (JHSON) are conducting a formal study into the emotional and physical impact of living kidney donation. Here’s an excerpt from the news release:
Who becomes a living donor and why? What information do they need to guide their decision? Who should be involved in the decision? And how can nurses best help support the patients and family involved in the process? Those are exactly the kinds of questions JHUSON Associate Professors Marie Nolan, PhD, MPH, RN; and Laura Taylor, PhD, RN, have been asking and answering in their groundbreaking research focused on the physical and emotional impact of living donor decisions.
Nolan’s work… has explored the process of living kidney donation, from the initial decision through surgical recovery. Her findings will help guide living donor education and informed consent, providing nurses and other transplant professionals information to help donors negotiate the decision regarding donation and for those who do donate, the recovery process. Taylor’s findings – the first of their kind to be reported in the literature – give nurses insight into working with the family of a living kidney donor, including the stress that she found often is reported by family caregivers of living kidney donors during postoperative recovery. To help better educate and prepare potential living organ donors and their families, she developed and is pilot testing the Living Donor Information Network for Caregivers (LINC), a web-based information and support intervention.
- I would be remiss if I didn’t give a node to the National Institute of Health’s A2ALL study, which is following several adult-to-adult living liver donors and recipients — over seven years — at 10 leading transplant centers across the nation (including Northwestern Memorial Hospital, where I gave my liver in 2006). There are only roughly 3,000 of us out there who have served as live liver donors, and because of how rarely the procedure is performed, relatively speaking, a combined study like this one is the only way to collect the valuable data that is required. It is probably taking an army to coordinate and plan the thing. I participated and continue to, and in fact received my first packet of results in person last week when a bunch of NMH’s former and future living liver donors gathered for a wonderful night of conversation. The A2ALL Web site doesn’t yet have the findings we received, but in a separate blog entry to come I’ll link you to them.
THANK YOU to all the people putting on these studies. They are essential to our health and well-being, to the care practioners who take care of us, and to the emotional and physical state of potential future donors.