by George Taniwaki

One of the most successful methods for finding a living donor is to send a letter to your social network. A real letter, printed on paper and delivered by postal service can be very effective in generating publicity. We receive so few personal letters today that it demands attention. It will be opened and read.

Rely on a matchmaker

It is often hard to ask for a donation for yourself. In this case, it may be helpful to first find a friend or family member who cannot be a donor herself to be the sender of the letter. We will call this person the “matchmaker”.

The letter should include the following:

  1. Introduction of patient and matchmaker and why you are sending this letter
  2. Short medical history explaining why patient needs a kidney
  3. Explanation why matchmaker cannot be donor
  4. Request to spread the word
  5. Request for potential donors to get a blood test (mention that you are especially hopeful of finding a type O donor if patient is type O)
  6. Contact info for the living donor transplant coordinator at the transplant hospital where surgery will take place (or the living donor advocate, depending on the process at the transplant hospital). If the letter will be sent to people who live in another state, discuss this with your transplant team first. There may be options available for the potential donor to start evaluation at another hospital
  7. Most transplant centers will only evaluate a single potential donor at a time. Thus, to reduce the chance that a strong candidate is kept waiting, you may want all potential donors to contact your matchmaker (not the transplant center’s transplant coordinator or donor advocate) first, and pick the most determined potential donor to go through the evaluation first

Examples

The letter shown below is based on an actual letter sent out by a person on behalf of a patient. Some details have been changed to maintain anonymity.

<Date>

<Letter_Recipient_Address>

Dear <Letter_Recipient_Name>,

    I am writing to share with you the latest news about my dear friend and your former accountant, <Patient_Name>. As you know, <Patient_Name> closed his business in 2010, after thirty years of dedicated service to the community. What you may not know is that <Patient_Name> also has chronic kidney disease and will soon need a transplant.

    In 1996, <Patient_Name> received a transplant from a deceased donor. He took excellent care of this precious gift and it lasted until this summer. Today, he undergoes dialysis therapy three times a week for four hours per treatment while waiting for a kidney. This time around, the chances of finding a kidney from a deceased donor are quite low since he has developed antibodies caused by the first transplant. It pains me to see my former boss who I love and respect being disabled like this.

    Several of <Patient_Name>’s friends have offered a kidney but for various reasons none have turned out to be acceptable candidates for donation. <Patient_Name> has no other family in the Washington area. For that reason, I have taken it upon myself to help him locate as many people as possible with blood type O who are willing to have a blood test to see if they would be medically suitable to be <Patient_Name>’s donor. There is absolutely no expense or obligation. If you or someone you know is willing to take this first step toward saving <Patient_Name>’s life, please contact me, <Matchmaker_Name> at <Matchmaker_Phone_Number>.

    As much as I would like to, I am unable to donate a kidney to <Patient_Name> because <Matchmaker_Reason>.

    If you have any questions about being a donor, you may contact the Independent Living Donor Advocate at the University of Washington Medical Center, where <Patient_Name> is a patient. The advocate’s role is to look out for the best interests of donors.  Her name is Paige Kayihan and her phone number is 206-598-3627 .

Thank you for reading this heart-felt request.

Sincerely,

<Matchmaker_Name>

For another example letter, see http://lkdn.org/letter_from_friend.html.

Below are pictures of two actual letters I found on the web. The first is an illustrated letter by a child.

Letter1

Letter by a child, image courtesy of Living Kidney Donation UK

By Ella Brown

My mum has kidney failure. I want her to get better. Sometimes Mum has to miss special assemblies. I have still got memories of when Mum skipped, played, runed, swimed and practised sports day. But I came in 2 place. But now we can’t do them so much with Mum. But we still love her very much. MUM.

The next is a letter by a nephrologist written on hospital stationery on behalf of a patient.

Letter2

Letter by a nephrologist, image courtesy of The Sam Team

April 5, 2012

To Whom it May Concern:

Mr. Sam Ferreri is on the active list at St. Luke’s Episcopal Hospital in Houston, Texas and in need of a living kidney transplant donor. Unfortunately, the list of potential transplant recipients is growing, whereas the donor pool is not growing or is actually shrinking. This means that the waiting times are now approaching three years or more for those patients who require a deceased donor. During this waiting period not only does the recipient have to continue dialysis treatment, but continue to endure the adverse effects of chronic kidney disease to the heart, blood vessels and bones.

There are significant advantages to a live kidney donation transplant (whether related or non-related):

  1. The most obvious advantage is that the transplant occurs much sooner and can be scheduled when both the recipient and the donor are prepared
  2. Both the donating of a living kidney and the actual transplant can happen simultaneously with very little loss of vitality to the organ. Therefore, this kidney usually has longer life span and will begin to function very quickly
  3. Living donor transplant recipients typically enjoy improved kidney function over deceased donor transplant recipients and are frequently on less medication
  4. The living donation allows another patient on the waiting list, who may not be fortunate enough to have a living donor, to “move up on the list” and get his/her kidney sooner thereby increasing the number of transplants that can be done
  5. There is frequently a significant emotional and psychological benefit to donor and recipient
  6. Laparoscopic surgery is available to potential donors whose anatomy is amenable to this type of surgery. Laparoscopic removal of the donor kidney offers many benefits to the donor including shorter hospital stay, shorter recovery time, and minimal surgical pain

I believe the best approach to finding living donors is for the recipient to let his/her family as well as those in his/her social network know that a kidney donor is needed. Please consider the option of becoming a living donor. If you have questions or concerns, the transplant coordinators at St. Luke’s Episcopal Hospital, as well as the staff physicians are available to speak with you or any potential donors. We can ten provide literature as well as counseling to any interested parties at no cost to the donor

Do not hesitate to call the Living Donor Coordinate at the number below if you have any questions or need any support:

<Coordinator_Name>

<Coordinator_Contact_Information>

Sincerely,

Whitson Etheridge, M.D.

Email

Sending letters requires that you know the recipient’s mailing address. In today’s online environment, you may not know that. In that case, you or your matchmaker will need to contact these people in order to get their address. If this is not possible, then you may want to send these people an email message rather than a letter. Some simple rules for an effective email campaign are:

  1. Include the recipient’s name is in the To: line. This may help ensure the message gets past their spam filters
  2. Do not include the names of people the recipient does not know in the To: line. You don’t want upset any person by spreading their private email address to strangers. This means you will need to send separate batches of emails to each circle of friends.
  3. Make the Subject: line catchy and upbeat, but keep it relevant. Again, this may help ensure the message gets past their spam filters

Thanks to Harvey Mysel of Living Kidney Donors Network for providing me with example letters that I use in my patient counseling. Thanks also to the patient who wishes to remain anonymous, whose letter is used in the example above.

For more ideas on finding a donor, see my Kidney patient guide.

[Update1: Added images of example letters I found on the web]

[Update2: Added advice on content for email]

[Update3: Added text from example letters]