A new drug provides a glimmer of hope for those of us with PKD: The Otsuka Pharmaceutical Co. announced on April 12, 2013 that the U.S. Food and Drug Administration (FDA) has accepted their new drug application for the potential use of tolvaptan in the treatment of autosomal dominant polycystic kidney disease (ADPKD), the disease I inherited from my father.
A New England Journal of Medicine study reports that tolvaptan slows the enlargement of cystic kidneys while also slowing the loss of kidney function–both by about 50%. The FDA’s target action date for Otsuka’s tolvaptan application is September 1, 2013. If approved, tolvaptan would become the first pharmaceutical therapy for patients with ADPKD.
What? That’s right.
In the last month there have been a number of newspaper articles and television news stories about this. On September 20, 2012 the New York Times said that during 2011 “2,644 of the 14,784 kidneys recovered were discarded, or nearly 18 percent, according to the United Network for Organ Sharing.”
Against this backdrop, my ongoing plea: I need someone to help me by becoming my kidney donor. (Follow this link to learn how.) Continue reading
Their mission is helping transplant and catastrophic injury patents raise funds in their own local communities to help pay medical expenses not covered by insurance–including certain donor costs. HelpHOPELive, a non-profit organization near Radnor, Pennsylvania, works to establish successful grass-roots fundraising campaigns for individuals and families who are facing a transplant or who have sustained a catastrophic injuries. Once a funding application (and demonstration of financial need) are made and accepted, any money raised is sent to HelpHOPELive where it is held in a patient–dedicated “Restricted Fund” and then disbursed as needed.
The supply of viable kidney donations continues to lag the steadily rising demand (4%-6% per year), and medical researchers are hard at work trying to change this dynamic. Among many different studies of kidney disease and transplantation, researchers around the country are looking at ways to decrease rejection rates and increase the length of time a kidney can be in limbo before transplantation. At NYPH/Columbia, one recently announced study at their Department of Transplantation is investigating a drug called 15NP to see if it helps kidney recipients with high rejection risk when their donor is older, or if the time between donation and implantation is greater than 24 hours. Continue reading
Guided by his faith, David Koster donated a kidney 10 years ago. After speaking with my wife, Laura, he wrote the following passage specifically for my site. His story is engaging, speaks from the heart and has a happy ending.
TO SAVE A LIFE!
There are events that take place in a persons life that are so significant and so meaningful that they have an effect on you for as long as you may live. Those of you who are married and have children can surely relate to this. By the grace of HaShem I had an experience that was so beautiful, so magnificent, so wonderful that my life will never be the same. I gave one of my kidneys to a total stranger. Continue reading
WNYC’s Leonard Lopate recently broadcast an interview with John Coates, the author of “The Hour Between Dog and Wolf: Risk Taking, Gut Feelings and the Biology of Boom and Bust.” A successful Wall Street trader, Coates made a mid-career pivot to study neuroscience and the biology of how risk- taking transforms body chemistry. In response to the NPR interview and a general surge of interest in mind-body connections, I offer my take on swimming–which has helped me immensely. I hope it helps other PDK-readers.
Make it a habit: The body adapts over a period of time-no stress on any particular part. Have your stuff dried out and ready to go from your previous swim. Find a time and place where you have a lane that’s free or shared with other swimmers who know pool etiquette. You’re free from gravity (the effects of those blood pressure pills and enlarged kidneys that pull your back out of whack). Your breathing gets synced with your stroke. Try different fins and hand paddles for resistance and variety. Long arm strokes and buoyancy helps to open the upper part of your lungs that is less affected by the pressure of kidneys pressing up on your diaphragm. Continue reading
Since the time my older daughter (who was adopted in China) was just a few years old, she’s been dancing with the New York Chinese Cultural Center (NYCCC). Our younger daughter subsequently joined in at NYCCC with a group of her peers. These classes figure largely in our daughters’ social lives: All the girls maintain contact with each other as well as with traditional Chinese culture, and they are all exposed to the different religious and ethnic cultures of each of our families. (In a year, the older girls go off to college . . . eeks, I remember them fondly as toddlers!) This involvement with NYCCC became the basis for a group of closely-knit families. We have shared joyous occasions such as the kids’ birthdays as well as sad and tragic losses; several of the moms including my wife have a monthly Friday night get-together.
The NYCCC dance and acrobatics instructors are all performers trained in China. Some of us parents asked them to form a Tai Chi class under a master of this form who is also trained in Chinese medicine. For several years I studied in this class, including single and double-sword forms. The movements and flow of the forms, and the explanations of the teacher (translated by a member of the class) were a direct way to help me understand the cultural background of my daughters’ homeland, as well as all the benefits of training in balance, coordination and getting centered in the flow of vital energy that is so essential to Tai Chi.
As my kidneys enlarged, I was no longer able to manage the up-and-down movements. I’m eager to resume this ancient martial arts form as soon as I can after my kidney transplant. First and foremost however, I need a kidney donor. Please help spread the word!
Says Devora Steinmetz, who donated a kidney to an Israeli in mid-May:
He is not a family member, he is not a member of my community, his family could hardly be more different than my own. He was simply a person in need of someone to step forward and save his life, and I was a person who had the capacity to do that. The testing proved us to be a match, I was launched into months of testing and explaining, and last Sunday I gave him one of my kidneys.
To explain her decision to be a kidney donor, Devora wrote The Torah of Chesed: Why I Became a Kidney Donor. It’s a compelling article, published by NY Jewish Week, an award-winning weekly covering local, national and international news and features affecting the Jewish community in New York, the US, Israel and around the world. Well worth the read.
In November 2009, Dana Stibolt–who was in desperate need of a kidney–started taking action. An internet-savvy guy who had a rare form of kidney disease, Dana started a blog and a Facebook Group about his need for a kidney transplant. His online effort attracted attention and a local newspaper ran a story about it. Almost two years later, a woman who found out about his condition via the internet stepped forward, and during June 2011 Dana received a kidney transplant, and he’s been doing great–as has his donor.
If you are willing to help me in my quest for a kidney transplant, here’s how.
For kidney donors and for those like me who are seeking a donor, there are lots of websites to check out. I’ve listed a few of the better ones below. All are listed in the column to the right, along with a few more that we add from time to time. If you know a site that ought to be on our list of links, add it in the comments section below and I will add it to the sidebar links section.
National Kidney Foundation — The National Kidney Foundation
National Kidney Registry — The National Kidney Registry
Donate Life — Very good for initial contact if you want to donate an organ
Donate Life NY — Also good for initial contact, a well-developed site
Paired Donation Network — For after a living donor expresses interest
Living Donors Online — For living donor communities. Includes a Twitter link.