Disclaimer

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.


Monday, December 3, 2018

KidneyQuest - The Search for Kidney Donors

  KidneyQuestTM* and SimpleKidneyTM*

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.

Our Goal:

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’s Blogger.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 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); and Kidney4Jackie.com (3 years of dialysis, Direct Kidney Donation within one year after KQ's intervention) and 18-year old Kidney4Matt.com (donor approved within 6 months).

Other Kidney Quests that are in progress and doing well include 16-year old Kidney4Aidan.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.

Program Concept:

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.

Ellis R. Mirsky
Kidney Recipient

Cheri Ruane
Kidney Donor
Cheri Ruane's bio profile in Boston Voyager

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Cheri's Story as a Donor: 

Read Cheri's story.

Learn about Cheri at Boston Society of Landscape Architects


Ned's Story as a Donor:

Read Ned's story.

Watch Ned's TEDx talk and as imbedded in Kidney4Aidan.com


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Originally published 11/16/2018, revised 12/3/2018

Advanced Donation Program - When Scheduling is an Issue; or Planning for a Future Transplant; or a Patient is Difficult to Match.

In addition to Direct Donations, Paired Kidney Transplants and Kidney Transplant Chains ("KTC's"), Ned Brooks, founder of DonorToDonor, speaks of a variation on KTC's.


Source of Graphic: Swaps and Chains and Vouchers, Oh My!: Evaluating How Saving More Lives Impacts the Equitable Allocation of Live Donor Kidneys by Evelyn Tenenbaum, Albany Law School of Union University, American Journal of Law & Medicine 44(1):67-118, March 2018.

"The National Kidney Registry ("NKR") Voucher program allows 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, DonorToDonor is working on another Voucher situation where the Voucher recipient is very difficult to match.

See the NKR's link discussing its Voucher program: https://www.kidneyregistry.org/info/voucher-program.