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.

Saturday, December 1, 2018

How a Kidney Donor Saved my Life and How we are Paying it Forward

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.

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