Make the Best of It
By Contributing Writer and PD Patient Jim McFarlin
I am often asked, "Jim, what other Web sites would you recommend for more information on living with dialysis?" (Actually, that's a lie: the editor of this Web site may be the only person who's ever asked me that. But it's a great way to begin an article.) To which I could reply, "Hey, you've got a search engine! Google "I've got crappy kidneys" and see what comes up!
However, I'm much too nice to be so flippant in my response, and besides, they're paying me to write this. So allow me to identify for you a handful of Internet sites that have provided me both information and comfort as my long dance with dialysis continues.
First and most significant on my list is the thought-provoking and unusually entertaining blog JK – Just Kidneying (http://justkidneying.blogspot.com/). In the spirit of full disclosure, I suppose I should mention that this is my blog, launched Sept. 25, 2009, to chronicle my personal journey from diagnosis of Stage IV renal failure through dialysis and, ultimately, a kidney transplant. But it has provided wonderful catharsis for me and (I'm told) strength and inspiration to others, put me in contact with many people across the country who are similarly affected with chronic kidney disease (CKD), and the relatively happy tone of the blog has led to numerous speaking and writing engagements – including this one. Don't try and tell me this site isn't important.
The National Kidney Foundation (www.kidney.org/) has a data-packed, interactive site that includes a Kidney Quiz to "test your kidney IQ," sign-up details for the benefit Kidney Walks the NKF sponsors across the country, up-to-the-minute kidney news and press releases (did you know hearing loss is common among patients with moderate CKD?), and – because more than 26 million Americans have some form of kidney disease and millions more are at risk and may not know it – the three simple tests you should ask your family doctor to perform at your yearly checkup.
I am fascinated by the patient-driven site I Hate Dialysis (www.ihatedialysis.com/). (And no, I have no vested interest in this one!) "We are not negative," the site's slogan declares. "We just hate dialysis!" Created by Southern California dialysis patient Billy "Epoman" Halcomb, who died of a viral infection in 2007, as a meeting place for people to share and rant about their treatments, I Hate Dialysis is now perpetuated by its users, whose frank conversations in the site's multiple forums are both insightful and instructive. It's open to caregivers and medical personnel too, because of a fact Halcomb discovered early on: Despite dramatic advances in the procedure and its life-saving properties, at one time or another everybody hates dialysis.
DaVita, one of the nation's largest chains of dialysis clinics, offers a rich resource of education on its consumer Web site (www.davita.com), including motivational stories, instructional videos, pro-kidney recipes and discussion forums. It's even got a GFR (Glomerular Filtration Rate) calculator to help determine your level of kidney function and a Food Analyzer to assess the nutrient content – particularly the phosphorous and potassium percentages – of what you're sticking in your mouth.
There are several excellent sites that provide help and hope to those seeking donor kidneys (or other organs, for that matter) for transplantation. Donate Life America (www.donatelife.net/) gives state-by-state, step-by-step instructions on how to register to become an organ donor, along with annual surveys and updates on donation rates nationwide. Living Donors Online (www.livingdonorsonline.org/) is an online community for living donors, potential donors, their families and medical professionals, with detailed pages on the advantages of living (as opposed to no longer living, or cadaver) organ donation. The federal site OrganDonor.Gov (www.organdonor.gov/) is a simple access point to the U.S. government's latest statistics on organ and tissue donation and transplantation, with a decidedly pro-active tone for visitors to get involved.
I'm sure that as you begin your deep dive into CKD research on the Web, you'll find many outstanding, informational sites that I haven't even heard about. Since we live in the greatest technological age in recorded history, we are fortunate to have an instrument as powerful as the World Wide Web to assist us in maintaining our health through dialysis, explaining our choices and preparing us for the future. This is just a short list of sites to get you started.
And don't forget Just Kidneying.