Welcome To KidneyQuest.com

 

You, or someone you know, needs a kidney transplant.

You are considering becoming a living kidney donor.

 

If either of the above statements is correct, you have found a website that can offer you information and strategies to help you attempt to reach your goal. 

 

Why have we established this webpage? 

►Because we were very recently searching for a kidney donor for our son, who was 27 years old at the onset of our search, and who had a reduced chance of finding a matching donor due to a high antibody level (PRA).   

►We are aware of the shortage of kidney donors and were unwilling to sit idly by and watch our son’s health and life continue to deteriorate.

 

What can we do to help you achieve your goal?

► For recipients and their advocates  -  We would like to share with you
the tools we developed during the course of our search for a donor.

► For potential living kidney donors - We offer you an opportunity to contact
the donor who saved our son’s life and ask him questions about the process
from beginning to end.

 

Where do you start?

► For recipients and their advocates - We assume that you do not have a donor, or have a donor that is incompatible.  If you do have an incompatible donor, your journey will be much easier.  There are transplant centers, Johns Hopkins Hospital being one of them, that offer programs such as the Paired Exchange Program and the Sensitized/Incompatible Kidney Transplant Program.  These are incredible programs that have the potential to free the recipient from dialysis and return quality of life.

The more difficult process, and one of the primary objectives of this website, is for those who are searching for a hero!   We initially were unsure whether it was appropriate to ask a total stranger, also known as an altruistic donor, to donate an organ.  We were not confident we would have even one offer.  Surprisingly, dozens of people contacted us and were tested as donors. 

If you want to search for altruistic donors, you must first confirm that the recipient’s transplant center will accept them.  Some transplants centers have a policy against this situation.   If the recipient decides to move to another transplant center, U.S. News and World Report offers a list of the “Best Hospitals” and then search under “Kidney Disease”.   Whether or not altruistic donors are accepted is not outlined on that site but it will provide you with an excellent search source.

► For potential living kidney donors – No question about it, this is a BIG decision! You absolutely have to do some soul searching and lots of research. In an effort to save another’s life, you are putting your life at risk. There are many websites that provide information on all facets of living organ donation.  You will undoubtedly be faced with family and friends who think you are “crazy” for considering offering one of your organs to a stranger.  You will also undoubtedly be told by others that they think you are brave, caring and extraordinarily kind.  What really matters is how YOU feel about the situation after considering all of the data.  Following are a few websites that can provide information on donation – LivingDonorsOnline.com, TransplantLiving.org, National Kidney Foundation and Donate Life America.

Transplant centers carefully screen all potential donors, whether or not they
are altruistic, for medical  and psychological problems.  Their goal is “to do no harm”.  And, with laparoscopic kidney removal, risk levels and recuperation times are dramatically reduced. But, we all know there are no guarantees and that is something that must be considered.

Our son’s donor, Jeff Hill, has kindly offered to have his personal contact information be made available to anyone who would like to ask him questions regarding his experiences.  His phone number is 919-842-7407 and his email address is lotsastuff4u@wavecable.com.

The path to finding a donor starts with…

We would like to provide you with the progression of advertising tools we developed which successfully found a donor for our son.

 

The Flyer

Our first effort was the development of a flyer, copy of ours is attached.  The flyer should be eye catching using bright colors and provide basic information about the recipient such as gender and age.  Your transplant center will provide you with the criteria required by them such as age parameters and health conditions causing exclusion from testing.  We listed that potential donors have A or O blood type, be between 21 and 60 years of age, in generally good health and not excessively overweight. We added that general information on donation can be found at livingorgandonorsonline.org. Pull tabs on the bottom of the flyer are important as well.   The pull tabs should contain the name and phone number of the person designated to receive calls from potential donors. Later in our search we developed a MySpace page and a webpage containing detailed information on our son. Inserting a MySpace page or webpage address on the pull tab is also very helpful. You can view a copy of the flyer we used in our search HERE.

Now what?  Make copies of your flyer and ask friends and family to post them for you in any location there is substantial foot traffic.  Convenience stores, gas stations, bowling alleys, bakeries, doctor’s offices, restaurants, grocery stores, laundromats, college flyer sites, churches, etc.

FLYERS FOR YOUR VEHICLES -  Develop a flyer, obviously with significantly larger print, which states Kidney Donor Needed for (age) (gender) and a phone number and place them in the side rear windows of the cars of your supporters.  We eventually ordered vinyl lettering for our vehicles which said “MySpace.com/MyKidneyQuest”.

When a person calls inquiring about the situation offer them a sincere “Thank you for calling” and then proceed to give them a condensed version of the situation surrounding the recipient such as whether dialysis has begun, their present state of health and ability to work, etc. Provide them with the contact information for the transplant center.  We found that only about 1/3 of all callers actually contacted the transplant center to pursue donation.  You must understand that many people get cold feet or discuss the situation with family and friends who talk them out of moving forward.

 

The Media

► We started with our local newspaper.  Newspapers are typically interested in printing a human interest story.  Photographs were taken.  We did not receive any contacts from this source but it may be different in your case.

► Our son’s friends emailed a local television station and explained the
situation.  The next day the TV crew met them at a local convenience
store and photographed their vehicle showing the flyers and his friends
entering the convenience store to ask permission to post a flyer.  A great
deal of activity followed the airing.

► Our oldest son emailed close to a hundred local radio DJ’s asking for help
in spreading the word.  Many did not respond but several agreed to
advertise our search on their webpage.  One radio station read the email  
on the air and a few months later invited us into the studio to discuss the
situation live.  The response was astounding.

 

The Internet

As previously stated, and at the suggestion of our oldest son, we set up
a MySpace page as yet another advertising tool.  The site explained about
our search and had a photo of our son and we chose our song to be  “I need
a hero”.  We then began doing friend requests.  Being the over zealous type,
I began by doing close to 100 friend request a day.  A time consuming
project but a great way of advertising.  Unfortunately, after having our page
deleted by MySpace three times we came to realize I was requesting too
many friends on a daily basis and our page was being seen by My
Space as spam.  Thereafter I limited my friend requests to less than 20 daily
and the page was never deleted again. While we only started requesting 20 users a day, you may still be able to go above that number slightly. When someone would accept  our friend request, I would send them an email explaining our goal and asking them to try to post even one flyer for us and to consider adding one of our banners to their page. One of the great things about MySpace is that you can develop a banner and ask your friends to put it on their page.  There are many websites that offer a free banner creator right on the site that make creating a banner extremely easy even for those not skilled in graphics design.  When one of their viewers clicks on it they are taken to your page.  During the course of our MySpace campaign we had over 500 friends.  Some were good friends and some were just friends.  Some were kind enough to post flyers for us.  They had the option of printing the flyer themselves or if they felt they could post a quantity of them, I mailed the flyers to them along with our heartfelt thanks.

In the early stages of using MySpace, during the period when our page was
deleted so many times, we became frustrated and our older son suggested we develop a webpage for the purpose of finding our son a kidney donor and MyKidneyQuest.com was born.  Fortunately for us, our oldest son knew how to design a webpage because we certainly did not.  MyKidneyQuest.com offered us unlimited space to explain our search and our son’s lifelong battle with kidney disease.  We set up a photo gallery showing the progression of his life as well as a page about our son describing the progression of his life in relation to his kidney disease.  We established a “Thank You” page where were listed all the kind people who were tested as a potential donor and we also publicly thanked those who supported our cause by posting flyers.

It also became obvious that we needed to set up an email account specifically for the purpose of donor searching.  Contact with donors that called us were documented on a list with date, caller’s name and number, any information the caller offered us their reason for calling and how they found out about our search.

Craigslist.org is a high traffic website and many potential donors were found here.  You can target a specific area near your home.  We listed under the "Wanted” section but there are also a few other section you can post under such as the "Community" section as well as the "Discussion Forums" located on Craigslist.  You can add a photograph of the recipient which we felt was helpful.  The title would be something like “28 Year Old Male Needs Kidney Donor” or “Kidney Donor Needed” or “Free My Son from Dialysis” – the heading possibilities are many. Then we would briefly explain the situation and refer potential donors to our website for additional information (or you could use a MySpace site).  You are only supposed to list in one geographical location at a time and to attempt to circumvent this, you can rearrange your heading and body text slightly and often that will work.  Sometimes after your best efforts, your add will be “flagged as spam” and your post will be deleted.  Just start over, and posting using multiple email addresses, also helps to avoid deleted posts.

 

Proceed with caution…

We were told from the onset by our local transplant center that while there are droves of kind, selfless Good Samaritans in this world that will offer an organ to save someone’s life, there are people who will try to extort money for selling an organ.  It was explained that these people will appear genuine in their offer but at the last minute they will withdraw their offer of a kidney if not paid a lump sum.  As disheartening as it is, you could encounter one of these ruthless people and, as we were told by our transplant center, you have to be prepared for the possibility of the transplant falling apart at the last minute.

 

Finances

It is illegal to reimburse anyone for the sale of an organ and we cannot stress this enough.  However, reimbursing a donor for lost wages, travel expense and lodging is not illegal. We felt that offering to try to reimburse our son’s donor for up to four weeks of lost wages was fair.  You may encounter a donor that has the ability to be paid through their employer via disability insurance or paid time off for vacation or personal time and if that is the case, we would have felt comfortable knowing the donor had not lost income due to their heroism.  Of course, in offering to reimburse lost wages we had no idea of what the weekly salary of a potential donor would be.  We could have found a donor with a weekly income of $2000.00 and for us, reimbursing wages of that level would be out of our ability; therefore, we indicated that “we will try to reimburse our son’s donor for up to four weeks of lost wages”. Additionally, the donor could develop complications or merely require more than four weeks off from work. We felt that we could not make a blanket statement that “we will reimburse all lost wages”.

Travel expenses, lodging and food can typically be reimbursed to the donor via programs that the transplant center offers.  Information on these programs is available from the Social Worker. 

 

Fundraiser 

To help us with the costs of the upcoming transplant (in our case, these costs were the rental of an apartment in Baltimore for a month, fuel, toll, parking and food expenses), my oldest son and a co-worker of my husband's arranged a fundraiser at a local pub.  We acquired prizes to use for raffles from numerous local businesses, everything from gift certificates to gift baskets and my husband's employer, who donated many items that we raffled, even gave us an iPod for the event.   My oldest son was working for a local DJ/Karaoke company at the time of our fundraiser and thanks to his employers he was able to provide entertainment for the fundraiser.  The pub that  allowed us to hold the event provided a banquet, or beef n' beer as it is called in our area, with foods such as roast beef sandwiches and hot wings as well as unlimited beer, wine and soda for the guests.

As for how we made money for the fundraiser, we had a local company print out tickets that we used for presales as well as at the door on the day of the fundraiser. We charged $30 per ticket, half of which went to the pub which paid for the food and drinks for the guests. We arranged two different types of raffles for the fundraiser. The first raffle was a 50/50 where we charged $1 per ticket or $10 for 15 tickets using a roll of tickets we bought from a local retail store. At the end of that raffles, the winner received half of the money collected from the ticket sales.  The second raffle we offered was what is commonly called a Chinese Auction. With this raffle, all items to be raffled are placed on tables with a container in front of each item.  We charged the same price for tickets as the 50/50 raffle and guests would then place as many tickets as they wish into each container for a chance to win the item corresponding to each container.

There are many other fun and exciting things that can be done at fundraisers to help raise money. By searching "fundraiser ideas" on the web you can find many ways to make your fundraiser a hit.

 

Feedback   

We sincerely hope that the information on this site can be of help to those needing a kidney transplant.  There is no question about it, searching for a hero becomes at the least a part time job.  It sometimes feels like you will never achieve your goal but you must continue to try and above all, have hope – believe that it will happen!  We would love to receive comments and updates.  Please email us at kidneyquest@gmail.com.