From PKD Foundation
#PKDAwarenessDay is fast approaching
Fort Saskatchewan toddler Sam McKail is on a mission to walk 100 kilometres in 100 days in support of the Calgary Kidney Foundation’s annual kidney walk and as of Aug. 14 he has already reached 81 kilometres.
The kidney walk will take place Sept. 8 - 10 with participants marching 100 kilometres in three days from K-Country to Calgary and Sam will walk his last kilometre down the hill of Calgary’s Olympic Park with family and other marchers.
“I’m kind of amazed because when we first started, pretty much everybody asked if he could actually walk 100 kilometres a day for 100 days and at that point he was only two years and four months old and that is a pretty high expectation, so I was a little nervous,” said his mother Kirstin Lehmann.
What started as a light hearted joke in her family last year has turned into a solid commitment between mother and son.
Lehmann decided to fully commit to the challenge on May 5 and she let the kidney foundation know that Sam, now two and a half years old, would be partaking in the march in his own way.
“They have thrown themselves behind Sam and made him his own mini marcher t-shirt and a little name tag,” she said.
Every time Sam completes ten kilometres Lehmann makes a video, which is posted online.
“He just keeps on going and it’s been a great way to explore Fort Saskatchewan,” she noted.
She said they moved to the Fort in April from Calgary.
Why they support the kidney foundation
Lehmann and her family have been involved with the kidney foundation for many years.
“The story dates back to 2010, long before Sam was even born. My uncle, even though he had been a remarkably healthy active person, couldn’t beat genetics and developed polycystic kidney disease and he needed a kidney transplant or dialysis,” she explained.
Her mother had volunteered to donate a kidney and completed all the prep work but at the last minute another family member stepped in to donate.
Lehmann’s mother felt that donating a kidney was meant to be so she called the Kidney Foundation and asked if they wanted a kidney. Her kidney was donated to the Paired Exchange program and because of that, a new kidney was able to go to someone on the transplant list.
“80 per cent of the people on the organ transplant waiting list are waiting for a kidney, so this was huge for somebody else. The thing was my mom was in her early 60’s at this point and people assumed her lifestyle would be extremely compromised due to only having one kidney,” said Lehmann.
People would worry about her mother every time she got a cold.
“It’s amazing how many people don’t realize you can live with one kidney and still live a very functional life,” she noted.
Her mother decided to prove all these people wrong and walk the kidney march’s 100 kilometres in three days, just to show them that they are wrong.
Her mother will now be marching for her fifth year come September.
“Over the five years she has raised almost $20,000. She is just $700 shy of reaching that goal within the next couple of weeks leading up to this year’s march,” said Lehmann.
She said if that was not enough to get her son involved, Lehmann’s cousin is also marching this year with her parents as well.
For more information on the kidney foundation visit, www.kidney.ca.
To follow Sam’s journey visit Lehmann’s blog, www.greatnorthernfamily.com.
Gift of Life
Wanna be a teacher’s pet for life? Don’t give an apple — give a kidney.
That’s what Ali Golian, 30, did for his former teacher Sonia Leonardo.
Golian and Leonardo go back to 2010, when he studied radiology under the now-42-year-old at London’s Kings College Hospital. “Sonia was an incredible teacher,” Golian tells South West News Service. He credits her with inspiring his career track (he’s now a radiology-equipment tutor).
After Golian graduated from school, he landed a job at Leonardo’s hospital. The two became fast friends, and worked together for two years. But they fell out of touch after she changed jobs.
Fast forward to five years later, when a Facebook post caught Golian’s eye. Leonardo’s sister was thanking friends for sending get-well flowers on her sister’s behalf. Concerned, Golian texted Leonardo.
His mentor and friend, he learned, was home on sick leave due to complications from polycystic kidney disease. The genetic disorder had caused cysts to grow in her kidneys, and she was in dire condition: Her kidney function had been reduced to 10 percent.
The transplant list, she told Golian, had a projected wait list of three years — and in the meantime, staying alive would mean enduring five half-hour dialysis sessions every single day. [Read more]
From MedicalXpress
A new analysis indicates that few strategies to increase living kidney donation have been evaluated effectively; however, educational strategies targeted to recipients and their family and friends have the best evidence of being successful. The analysis, which appears in an upcoming issue of the Clinical Journal of the American Society of Nephrology (CJASN), also provides possible suggestions that could help investigators, organizations, and policy makers determine which, out of the many strategies that may be used to increase living donation, should be considered.
There is a critical need to increase rates of living kidney donation to address the growing organ shortage; however, it's unclear which strategies are effective. To investigate, Scott Klarenbach, MD, MSc (University of Alberta) and his colleagues summarized the breadth and quality of the evidence on approaches to increase living kidney donation.
When the researchers conducted a search of the medical literature, they found very few high quality studies. The most evidence related to educational strategies: those directed at both the potential recipient and their close social network. Of the 7 studies that focused on educational strategies, 2 studies that targeted the potential recipient's close social network reported significant benefits. Other approaches were also identified, but their impact was assessed through less rigorous study designs.
"Living kidney donation is the optimal treatment for patients with kidney failure, who would otherwise be treated with dialysis. It improves survival and quality of life, and is less resource intensive and can be safely performed with appropriate donor selection," said Dr. Klarenbach. "There are large numbers of patients with kidney failure waiting for a kidney transplant, and increasing living kidney donation would reduce their wait time and improve outcomes."
In an accompanying editorial, Krista Lentine, MD, PhD (Saint Louse University School of Medicine) Didier Mandelbrot, MD (University of Wisconsin School of Medicine) noted that certain steps are needed for practitioners and policymakers to expand living donor kidney transplantation. "We and others believe that the strategies that have the potential to improve informed consent and access to living kidney donor transplantation include: (a) broader and repeated living donor kidney transplantation education beginning at earlier stages of kidney disease and involving the patient's social network, (b) removal of disincentives to donation, (c) optimized efficiency in the evaluation of donor candidates, and (d) improving the safety and defensibility of donor selection," they wrote.
Abstract Background There is limited real-world data on the economic burden of patients with autosomal dominant polycystic kidney disease (ADPKD). The objective of this study was to estimate the annual direct and indirect costs of patients with ADPKD by severity of the disease: chronic kidney disease (CKD) stages 1–3; CKD stages 4–5; transplant recipients; and maintenance dialysis patients. Methods A retrospective study of ADPKD patients was undertaken April–December 2014 in Denmark, Finland, Norway and Sweden. Data on medical resource utilisation were extracted from medical charts and patients were asked to complete a self-administered questionnaire. Results A total of 266 patients were contacted, 243 (91%) of whom provided consent to participate in the study. Results showed that the economic burden of ADPKD was substantial at all levels of the disease. Lost wages due to reduced productivity were large in absolute terms across all disease strata. Mean total annual costs were highest in dialysis patients, driven by maintenance dialysis care, while the use of immunosuppressants was the main cost component for transplant care. Costs were twice as high in patients with CKD stages 4–5 compared to CKD stages 1–3. Conclusions Costs associated with ADPKD are significant and the progression of the disease is associated with an increased frequency and intensity of medical resource utilisation. Interventions that can slow the progression of the disease have the potential to lead to substantial reductions in costs for the treatment of ADPKD.
There is a critical need to increase rates of living kidney donation to address the growing organ shortage; however, it's unclear which strategies are effective. To investigate, Scott Klarenbach, MD, MSc (University of Alberta) and his colleagues summarized the breadth and quality of the evidence on approaches to increase living kidney donation.
When the researchers conducted a search of the medical literature, they found very few high quality studies. The most evidence related to educational strategies: those directed at both the potential recipient and their close social network. Of the 7 studies that focused on educational strategies, 2 studies that targeted the potential recipient's close social network reported significant benefits. Other approaches were also identified, but their impact was assessed through less rigorous study designs.
"Living kidney donation is the optimal treatment for patients with kidney failure, who would otherwise be treated with dialysis. It improves survival and quality of life, and is less resource intensive and can be safely performed with appropriate donor selection," said Dr. Klarenbach. "There are large numbers of patients with kidney failure waiting for a kidney transplant, and increasing living kidney donation would reduce their wait time and improve outcomes."
In an accompanying editorial, Krista Lentine, MD, PhD (Saint Louse University School of Medicine) Didier Mandelbrot, MD (University of Wisconsin School of Medicine) noted that certain steps are needed for practitioners and policymakers to expand living donor kidney transplantation. "We and others believe that the strategies that have the potential to improve informed consent and access to living kidney donor transplantation include: (a) broader and repeated living donor kidney transplantation education beginning at earlier stages of kidney disease and involving the patient's social network, (b) removal of disincentives to donation, (c) optimized efficiency in the evaluation of donor candidates, and (d) improving the safety and defensibility of donor selection," they wrote.
PKD Research
From FigShare
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