For those facing the initially daunting task of trying to navigate the kidney transplant process. Our intention is to share what we've learned as kidney transplant donors, recipients and other interested persons in a simple, easy-to-understand way with links to original source material for more in-depth information. If page does not load HIT THE HOME BUTTON.
NOTE: This blog does not contain medical advice. It is not intended to be a scholarly journal, merely a good-faith effort by unpaid, self-funded volunteers to help others beginning their own kidney transplant quests. Please always check with your own medical and other professionals before taking or not taking any action that might be discussed here. Never rely on any information in this blog. It's only information acquired during personal, non-professional experiences during our own kidney quests. Always consult with, and rely only upon information from, licensed medical practitioners with whom you have a doctor-patient relationship.
Tuesday, December 25, 2018
A San Francisco Trial Lawyer Gives a Life-Saving Gift
John Worden, a trial lawyer and partner at Schiff Hardin, donated his kidney to a stranger in November after witnessing his wife’s life-saving donation of her kidney to a friend of their daughter.
a Law.com publication By Xiumei Dong | December 21, 2018 at 06:13 PM
John Worden, Schiff Hardin partner
John Worden, a trial lawyer and partner at Schiff Hardin, donated his kidney to a stranger in November after witnessing his wife’s life-saving donation of her kidney to a friend of their daughter.
“Our daughter’s friend before she got the kidney, she looked like she was really sick,” Worden aid. “Now she just looks different. Feels differently.”
After learning about the process, Worden entered himself as part of a “chain”—people willing to donate who don’t match the person they know who is seeking a kidney. Worden ultimately donated his kidney Nov. 9 to a California resident he’d never met. And he explained that as part of the chain his recipient’s brother-in-law ended up donating his kidney to someone else.
“Until this happened, I was under the impression that people need two kidneys. Most people don’t need two kidneys if they are healthy,” Worden said. “I realized that if I can do it, a lot of people can do it.”
Worden said his firm has been supportive through the whole process as he recovers. He joined Schiff Hardin’s San Francisco office in 2007 after the Chicago-based firm merged with his former firm, Morgenstein & Jubelirer. Worden started with Morgenstein & Jubelirer in 1989 and previously served a stint as its managing partner.
Worden estimates that he’s tried about 50 cases for plaintiffs and defendants in state and federal courts during his career. He has no trial scheduled until January. Since the surgery, he has been mostly working from home.
“Most lawyers can [donate] because lawyers can work remotely,” said Worden, urging his fellow attorneys to sign upas donors.
Worden said the most challenging part of the process has been the recovery stage. Prior to the surgery, Worden used to compete in a number sports, including soccer and basketball. He is also a black belt kung fu instructor, who has won multiple golds at the National Kung Fu Championships in Baltimore. Worden has to put those physical activities on hold until he is fully recovered.
“My six-pack is now a bulbous one-pack,” Worden said.
Despite the pain and recovery process, Worden said he has only one regret: “I wish I had done it sooner.” He encourages more people to consider this life-saving gift.
“I would just encourage people to get tested,” he said. “If more people get tested, then sharing my story would have been worth it.”
KidneyQuest is a multidisciplinary volunteer project develop interest and skills in efficient use of website development tools and social media to develop the pool of available kidney donors, thereby saving lives of kidney patients in need of transplant and substantially reducing the financial burden on our healthcare system imposed by more expensive dialysis, the only alternative to transplant.
Subjects would include kidney function and disease as they relate to transplantation; the scope of the kidney donor shortfall in the U.S.; the transplant infrastructure and how to navigate it; and available sources of assistance, including self-help.
Areas of focus involved:
Internet domain name registration process and URL forwarding
website design and social media use for non-profit and eleemosynary purposes
communications and marketing
business planning and development
healthcare education and funding
Currently KidneyQuest is an unincorporated organization in formation staffed by self-funded volunteers who have experienced kidney donation first-hand, either through donating or receiving a kidney. Our website is KidneyQuest.org.
KidneyQuest’s goal is to increase public awareness of the pervasiveness of kidney disease in order to reach and bring forth healthy donors to share their gifts of life through all forms of donation, including kidney transplant chains, paired kidney donations and direct kidney donations.
Origins and Life-Saving:
Sometime ago I was drowning, but I am alive today because of the heroic intervention of an extraordinary life-saver.
In the pre-dawn hours of July 19, 2017, a 44-year old athlete who rows on the Charles River several times each week, saw me in extreme distress, jumped in, pulled me out, administered a life-saving procedure and saved my life. Both of us are fine now and I could not be more grateful. She saved my life.
I was dying, circling the drain, surely spiraling in and not slowly.
But it wasn’t what you might be thinking. I was drowning in a river alright, but it wasn’t the Charles. I was drowning in a river of toxic waste products that my diseased kidneys were failing to remove from my body. My heroic life-saver donated her left kidney to me so that I could live.
As soon as I could get back on my feet, I set about helping others in similar predicaments.
My journey through the kidney transplant process was, for me and for most kidney patients, an uncharted high-stakes adventure into the unknown.
There’s no “how to” book on finding a kidney donor. There’s no phone number to call to get a kidney. And you can’t buy one - that’s a federal crime. There’s no store with kidneys on a shelf waiting to be implanted into kidney recipients.
When you need a kidney, you need a kidney desperately. You need a kidney to continue to live. Dialysis is a relatively temporary solution. Live kidney transplant patients can have a normal life expectancy and a normal quality of life. Not so with dialysis patients who must be connected to machines for extended periods, and fight a never-ending battle with fatigue and substantially diminished quality and duration of life.
I needed a kidney and I needed it quickly. I was told that the national waiting list for a kidney would involve a 5- to 7-year wait. For some that's interminable. I viewed my health problem as a possible death sentence that needed to be converted to only a health problem and eventually a health solution.
I sought advice from friends and non-profit organizations. And I consulted with doctors, social media experts and medical insurance professionals. I needed information from and advice in a variety of disciplines.
It was suggested that I circulate a flyer with my photo, my need and my phone number and hope for the best. Others told me to wait on the UNOS list (5 or more years). I learned that some depended on lawn signs and bumper stickers.
But none of the proposed approaches to finding a kidney donor struck me as particularly viable. So, after digesting everything that I had learned, I embarked upon a course of action of my own design. I was going to save my life. I wasn’t going to sit around waiting for someone to find a donor for me. I had to find my own donor. And that’s what I did.
Paraphrasing Liam Neeson, I have a particular set of skills; skills I have acquired over a very long career. I don’t claim great expertise, but I have a sufficient working knowledge in certain areas that I was able to deploy in my personal Kidney Quest.
To put it simply, I created a website (using Google’sBlogger.com), and launched a social media campaign (using Facebook.com). Phase A was website design. Phase B was to design and launch a social media campaign.
I had good success with both elements of my Kidney Quest. More than a thousand people shared my Facebook post and my Blogger.com webpage experienced 18,000 pageviews. Within three months, a person I had never met and did not previously know, Cheri Ruane, then a 44-year old wife, mother of two, saw my re-posted Facebook post, went on to read my blog page and decided that this was something that she could do. She could save my life. And she did.
That’s the nickel version. There’s a lot more to our story, but that’s basically what brought Cheri and me together and that's the reason thata I am doing so well today.
Helping Others Find Their Donors:
As soon as I was back on my feet, I knew I had a mission. My mission was to bring my Kidney Quest experience to others so that they could clone it and go on to live and enjoy their lives, like I was doing. Since my kidney transplant, Cheri and I have worked with more than a dozen kidney patients or their parents (that’s right, some of the people we’ve helped are children). And our efforts have been successful. So far our KidneyQuest efforts have helped find kidney donors for 5 transplanted patients, and others are scheduled or have potential donors undergoing screening and testing.
Many factors weigh into the success of each patient's personal Kidney Quest. Webpage and social media design and message clearly are very important but the biggest differentiator appears to be the patient’s own efforts in getting the word out. Having a supporting team of family and friends eases that burden.
All of our successful Kidney Quests are marked by aggressive and continued social media campaigns.
Most of the Kidney Quests that are languishing are marked by minimal efforts to apply the powers of social media to finding a donor.
Some of our Kidney Quests that resulted in transplants are4FredAKidney.com (3-1/2 years on dialysis, Direct Kidney Donation 3 months after KQ's intervention);Kidney4Leesa.com (transplanted pre-dialysis via Kidney Transplant Chain after less than one year); andKidney4Jackie.com (3 years of dialysis, Direct Kidney Donation within one year after KQ's intervention) and 18-year oldKidney4Matt.com(donor approved within 6 months).
Other Kidney Quests that are in progress and doing well include 16-year oldKidney4Aidan.com(4.5 million pageviews; 60+ requests for donor questionnaire, plus overflow inquiries directed to DonorToDonor.org; and Kidney4Saul.com (pre-dialysis). Still others are in progress.
Success Brings Capacity Problems:
We are now inundated with demand for our free service. We are overwhelmed and unable to help all the people who seek us out for their own personal Kidney Quests.
So we’ve been thinking about how to effectively leverage the knowledge and skills that we've developed in our self-funded non-profit volunteer work to raise kidney donation awareness in order to reach more donors and help more patients save their lives.
And that’s the reason for this message.
KidneyQuest envisions conducting a variety of educational and motivational projects, including a 2-hour presentation to potential candidate kidney activists, a one-in-one personal and/or class project for computer or business students, and a full-term college course, mixing non-profit, social media, webpage design, marketing, business development and other areas of learning. The goal of KidneyQuest projects would be to expand the body of volunteers assisting others in finding and educating kidney donors in order to exponentiate the pool of available kidney donors.
The potential impact of successful KidneyQuest projects is enormous. Successful KidneyQuest projects will save lives. And students, once engaged in helping others, could become interested in and committed to one or more areas of philanthropic work in which they gain experience.
KidneyQuest volunteers would work with your school’s faculty to develop a tailored course and we could deliver motivational speakers including: directed kidney donor Cheri Ruane; non-directed kidney donor, Ned Brooks, a TEDx speaker, and founder of Donor To Donor; kidney donor Chabad Rabbi Boruch Wolf, founder of Kidney Assist, and others.
If you or your school is interested in exploring KidneyQuest's projects, please let us know. Contact us through the forms on this page.
"TheNational Kidney Registry ("NKR") Voucher programallows donors to donate their kidney in advance (even years) before their intended recipient may need a kidney. Some Voucher donors have donated 20+ years before their intended recipient is expected to need a transplant with the hope that their intended recipient will never need a transplant. The Voucher program is a subset of the NKR Advanced Donation Program which began in 2011." Source:https://www.kidneyregistry.org/info/voucher-program.
Ned said that, in addition, sometimes a donor's work- or life-schedule makes scheduling a kidney donation difficult. And sometimes a donor's scheduling issues can affect a paired donation. Also, timing issues may arise when a donor wants to donate a kidney as part of a KTC to benefit an identified patient (such as a donor motivated by one individual's personal story) but cannot make herself available on the date that the KTC planners need her to donate in order to keep the chain going. In such circumstances, the NKR Advanced Donation Program might provide a solution.
With the Voucher Program, Ned said, the first donation in the KTC is by the donor at her convenience and schedule, thereby starting the KTC. That donor designates her intended beneficiary to receive a Voucher that becomes activated upon completion of her initiating donation. And the intended beneficiary gets priority to be the end transplant recipient in a KTC.
Ned spoke of such a situation in a 2017 KTC. Margaret donated in August and gave a voucher to Richard. Richard received his kidney 12 weeks later. Currently,DonorToDonoris working on another Voucher situation where the Voucher recipient is very difficult to match.
Navigating the kidney transplant world as a desperate recipient-to-be is daunting.
We're going to try to make it easier in many ways. On this blog we will explain what we've learned as kidney recipients and kidney donors.
There are other Options:
Dialysis and the UNOS list are the most common options but living kidney transplant is the best, albeit least used treatment. It's the least used because there is an insufficient number of donors relative to the population of patients needing transplant. But I received a living donation and I've helped others find their ways to doing the same. There can be no guarantees, but there are ways to improve your possibilities. We are still learning, but webelieve that we've acquired enough information to share with others who need transplants. How Did I Find My Donor?
To put it simply, I created a website (using Google’s Blogger.com), and launched a social media campaign (using Facebook.com). Phase A was website design. Phase B was designing and launching a social media campaign.
I recommend using a webpage with a unique but memorable name containing information to be conveyed (such as Kidney4Ellis.com) or a Facebook page and then using Facebook to spread your information by directing interested persons to the webpage for more detailed information.
Most importantly, I don't recommend asking for a kidney. It's too big an ask (the "Big Ask"). Ask for something that masses of people would be readily willing to do, such as sharing your post (a "Small Ask").
I recommend that people just ask that their posts to Facebook be shared. It doesn't cost anything and people can easily help you simply by sharing your post; very little effort but potentially a huge result. Facebook Posts - Yes:
I use webpages built with a very simple tool (Blogger.com). Blogger is easy to use, modify and update. Plus it comes with built-in analytical tools that allow you to see how your posts are doing.
I my own Kidney Quest (Kidney4Ellis.blogspot.com) more than a thousand people shared my Facebook post and my page drew 18,000 page views. Within three months, a person whom I had never previously met and did not previously know, Cheri Ruane (co-creator of this blog), then a 44-year old wife and mother of two, saw my twice re-posted Facebook post (3 levels removed from my first post), went on to read my webpage and decided that this was something that she could do. She could save my life. And she did.
That’s the nickel version. There’s a lot more to our story, but that’s basically what brought Cheri and me together and that's the reason that I am alive and thriving today.
Helping Others Find Their Donors:
As soon as I was back on my feet, I knew I had a mission. My mission was to bring my Kidney Quest experience to others so that they could clone it and go on to live and enjoy their lives, like I was doing. Since my kidney transplant, Cheri and I have worked with more than 30 kidney patients or their parents (that’s right, some of the people we’ve helped are children). And our efforts can be described at a minimum as reasonably successful. as of the end of 2019, of those 30-plus patients with whom we have worked 17 patients have received living kidney donations. Please note that that is not to say that our efforts resulted in those transplants. No. But our small sample anecdotal information appears to suggest to my untrained eye, that there there may be some corelation between efforts to seek a living kidney donor by means of the Internet and success in receiving a living kidney transplant.
I do think that our efforts helped even though in many cases, a donor would have been found without our involvement. But I do believe our efforts did help a number of patients whom we helped in some regard to achieve their success.
What makes for a Successful Campaign? Many factors weigh into the success of each patient's personal Kidney Quest. Webpage and social media design and message clearly are very important but the biggest differentiator appears to be the patient’s and their team's own efforts in getting the word out. Having a supporting team of family and friends eases that burden.
Many of our successful Kidney Quests are marked by aggressive and sustained social media campaigns. Conversely, most of the Kidney Quests that are languishing are marked by lesser efforts to apply the powers of social media to finding a donor.
And People make Mistakes:
1. Who are you? Inquiring minds want to know. Potential donors usually want to know too.
If you hold or post polarized political views of either extreme, you’ll eliminate people of a different view. You should stay non-political, and cleanse your attitude as well as your personal social media presence of non-PC material.
You are seeking the gift of life, your life. Recognize that everything else is trivial and not worth wasting time on. You have one goal - stay alive by getting a kidney transplant. Avoid petty social media squabbles and offensive views.
Your life-saving kidney could come from someone on the complete opposite side of the fence politically and socially. Kidneys are age-, skin color-, race-, national origin-, sexual orientation-, and gender-blind. If you're not also, you'll likely be passed over for someone who is. 2. Don't specify blood type - it doesn't matter, and specifying could impair your quest: If you specify that you need a particular blood type, you could be eliminating large numbers of potential donors. In fact with paired kidney donation and kidney transfer chains, a willing donor of any blood type can result in you getting a kidney. I believe that specifying blood type is a mistake. See https://kidneyquestorg.blogspot.com/2018/11/the-costly-mistake-of-specifying-blood.html. 3. There's plain and there's fancy. Plain and Simple are Better: Fancy Wordpress-style webpages might be too slick, too professional-looking. Avoid distracting special effects and pukey colors. Keep it simple. Make your website look like the work of an ordinary person who needs a kidney - you. I don't care for kidney websites that look as if they had been designed by a Madison Avenue advertising agency. I use blogger.com for a simple but pleasant appearance. 4. Use Videos: People fail to embed informational YouTube videos sometimes made by the same hospital where they are registered. YouTube videos deliver information in an easy-to-understand way. I use them. You should too. They disseminate usual information and increase awareness of the need for more kidney donors.
5. Use Photographs: A picture is worth a thousand words.
6. Know your Stats: People don’t know their webpage stats. What are your traffic patterns? At what times of the day are people viewing your website? How many people are viewing your webpage? How much time are they spending on your webpage (i.e., how "sticky" is your site?). Google and Blogger analytics can tell you what’s working on your webpage and what’s not working to drive traffic to your webpage. I used them. You should too. If you don't know your website stats, how can you know whether your message is reaching its intended audience? Answer: You can't.
7. Mobilize the Troops: Pull out all the stops. This is your life we're talking about. It's an all hands on deck situation. Get help from anyone and everyone. Try everything you can think of. Car bumper stickers, tee-shirts, lawn signs, prayer groups (Facebook has them), local TV interviews, local newspaper pubic interest articles. Enlist every group of which you are a member (social, volunteer, religious, school alumni, musical, charities - the list is endless.
8. Don't be Shy; Don't be Too Proud: You have nothing to loss and everything to gain by coming out with information about your need for a kidney donor. Forget about not wanting to burden your friends with your health problem. If they're your friends, they will happily do at least the minimum (sharing your post with a moving message about you). Your choice is a stark one - Pride and dignity be damned. Let everyone know you need a kidney, and let them know it again and again. Ask them to share your post again and again.
Our Results are Pretty Good. How are your Results?
Some of our Kidney Quests that resulted in transplants are 4FredAKidney.com (3-1/2 years on dialysis, Direct Kidney Donation 3 months after KQ's intervention); Kidney4Leesa.com (transplanted pre-dialysis via Kidney Transplant Chain after less than one year); Kidney4Jackie.com (3 years of dialysis, Direct Kidney Donation within one year after KQ's intervention); Kidney4Matt.com (6 months from launch to transplant); 16-year old Kidney4Aidan.com (4.6 million pageviews; 60+ requests for donor questionnaire, plus about 40 overflow inquiries directed to DonorToDonor.org; and, of course, Kidney4Ellis.com.
Specifying blood type when seeking a kidney donor is a mistake. Let's debunk the myth that you need a donor with the same blood type in order for you to receive a kidney transplant. In the case of direct donations, yes, only donors with certain blood types can make a direct donation. But direct donation isn't the only way. Paired donations (where a Donor 1 gives to Recipient 2 and Donor 2 gives to Recipient 1), increase the availability of suitable donors to the intended recipient. Kidney Transplant Chains ("KTCs") take that idea farther. In KTCs, a willing donor starts the chain by giving to Recipient 1. Donor 1 then donates to Recipient 2 and Donor 2 donates to Recipient 3, and so on. So you don't need a donor with the same blood type. You just need a donor willing to donate their kidney so that you can receive a kidney, albeit from someone else in the KTC. Here's the story: 1. A donor with any blood type can provide a kidney so that their intended beneficiary receives a kidney, just not necessarily the donor's kidney, but a kidney neverthless, just one from someone else who donates a kidney to benefit some other recipient or for anyone without specific direction. That's done via a KTC facilitated by one or more hospitals or by the National Kidney Registry ("NKR"). 2. Specifying a particular blood type can eliminate significant portions of the donor population who might think that they can't help the intended recipient because their blood type is different. The fact is, though, that through KTCs persons with a different blood type can donate so that their intended beneficiary does receive a kidney transplant. 3. There are 8 blood types, with the following prevalences:
4. The chart below shows the percentage of the donor population who can donate to you directly, as well as the percentage of the donor population who cannot donate to you directly. And, even though some donors cannot donate to you directly, nevertheless, their donation of a kidney into a kidney transplant chain, can result in you getting a compatible kidney, just not your donor's kidney.
Source: Ellis Mirsky, this Post, this Blog
Thus, if you're O and you specify O for a donor, you're unnecessarily eliminating 55% of the donor population.
If you're B, and you specify B or O, you're unnessarily eliminating 44%of the donor population.
Certainly no AB blood type recipient should ever restrict donors to AB blood types because any blood type donor can donate to an AB recipient.
And any A recipient can accept A or O, and that's 85% of the population. But it's not 100% of the population so why eliminate even 15% of the eligible donor population?
Note: This assumes uniform distributions of eligible donors among all blood types which may or may not be correct.
For a quick education about living donation, Basics of Living Donation
by Explore Transplant, a national consortium of the leading experts in
transplant and health literacy, who work to ensure that transplant
patients and living donors can make informed treatment choices.
What if A Prospective Donor is Not a Compatible Match?
Hospitals that participate in the National Kidney Registry, and other hospitals, can facilitate a kidney swap where a willing but
incompatible kidney donor wants to help a particular patient who has an incompatible kidney.
Transplants can be arranged where the willing donor is placed in a pool of other willing donors willing to donate to whomever needs their kidney. In the process, the donor's intended recipient receives a kidney from someone else in the pool whose own intended recipient also receives a compatible kidney from yet another person in the pool.
Such swaps are called Kidney
Transplant Chains. Such chains involve a
pool of patients where each patient is paired with a donor willing to donate but
who is incompatible because of differences in blood type or other
tissue sensitivities. Kidneys within the exchange are swapped among
incompatible pairs to allow for more transplants. That arrangement
increases the number of transplants dramatically. That saves many
lives, and it could save my life.
A simpler form of this kidney sharing occurs when an
incompatible donor wants to donate their kidney for a particular patient and is willing
to participate in a kidney swap whereby that donor's kidney is essentially traded
with another donor's kidney that is incompatible with their recipient
but whose kidney is compatible with the first donor's patient. That saves two lives.