Writing to Transplant Recipients

 

Intermountain Donor Services supports written correspondence between recipients and donor families. If you are a donor family interested in writing to the recipient, following are some guidelines. If you need more detailed instructions on writing to recipients or have any questions, feel free to contact Karen Hannahs at Intermountain Donor Services at 801-478-7333 or 800-833-6667, or email This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

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The decision to write to your loved ones’ transplant recipient(s) is a very individual and personal one. What may be right for one person may not be right for someone else. Those who do write find that sharing information about their loved one, their family, and their decision to donate is very healing and helps them deal with their grief.

If you choose to write, try not to be influenced by arbitrary time frames. Some people are ready to write shortly after their loss, while other people may not be ready for months or even years. Do whatever feels right for you. All correspondence is completely anonymous and identities are kept confidential.

 

Guidelines for correspondence:

 

Provide general information:

  • Your loved one’s first name only
  • Their hobbies or interests
  • The state where you live
  • Your family situation, such as marital status, children, or grandchildren
  • Since the religion of the transplant recipient’s family is unknown, please consider this if you are including religious comments

Closing your card or letter:

  • Sign your first name only
  • Do not reveal your address, phone number, or email address
  • Do not reveal the name of the hospital or physician who cared for your loved one

Mailing your card or letter:

  • Place it in an unsealed envelope (please be aware that to ensure confidentiality, all cards and letters are reviewed by the Family Support Liaison before they are forwarded to recipients).
  • Include in the mailing envelope a separate piece of paper with:
  • Your full name
  • Your loved one’s full name
  • Date of the donation

Mail to:    

Intermountain Donor Services

230 South 500 East, #290

Salt Lake City, Utah 84102

Attn: Recipient Correspondence

 

Allow extra mailing time. Intermountain Donor Services will forward your card or letter to the transplant center and they will forward it to your loved one’s recipient. Because of this process, it may take longer than usual for your card or letter to reach it’s final destination. You may or may not receive a response from them. Many transplant recipients have said they are overwhelmed with emotion and have difficulty expressing their gratitude in words. Others may take several months or even years before they feel comfortable writing to their donor family.

 

Sugerencias para escribirles a los beneficiarios

de la donación de su Ser Querido

 

Estas sugerencias le servirán de orientación si desea escribirle a las personas que se beneficiaron del generoso regalo de vida que concedió su ser querido a través de un trasplante. Muchos beneficiarios comentan que leer una carta personal por parte de la familia del donante les ayuda a obtener una comprensión y aprecio aún más profundos del significado que tiene este regalo.

 

Las siguientes sugerencias le orientarán al escribirle al beneficiario y/o a sus familias:

 

Hable de su ser querido:

  • Mencione tan sólo el nombre de pila.
  • Mencione el estado (no la ciudad) en el que vivía su ser querido.
  • Mencione la edad de su ser querido.
  • Mencione el trabajo u ocupación de su ser querido (sin dar nombres de compañías).
  • Mencione la situación familiar de su ser querido, tal como su estado marital, si tuvo hijos o nietos. Recuerde mencionar tan sólo los nombres de pila.
  • Sea prudente al hacer comentarios religiosos puesto que no conoce la religión del beneficiario.

Para concluir su carta

  • Firme sólo con su nombre de pila.
  • No incluya su dirección, ciudad o número de teléfono.
  • No revele el nombre o el lugar del hospital ni el médico involucrado en la donación.

Cómo enviar su carta

  • Coloque su carta en un sobre sin sellar.
  • Incluya una hoja de papel aparte con su nombre completo y el nombre de su ser querido, incluyendo la fecha de su muerte. (Esto es para información de Intermountain Donor Services).
  • Ponga estas cosas en otro sobre y envíelo por correo a Intermountain Donor Services, Attn: Donor Family Services, 230 S 500 E Ste 290, Salt Lake City, UT 84102.

Al recibir su carta, Intermountain Donor Services la revisará para verificar que cumpla con los requisitos de privacidad y luego la enviará al centro de trasplantes al que el beneficiario está afiliado. El centro de trasplantes recibirá su carta y determinará si es oportuno el momento para enviarla. El centro de trasplantes debe considerar el estado y el bienestar del beneficiario antes de enviar información sensitiva sobre el donante. Intermountain Donor Services no siempre recibe notificación de que una carta no ha sido enviada al beneficiario.

¿Recibiré una respuesta del beneficiario?

Es posible que reciba o que no reciba respuesta. Algunos beneficiarios han comentado que el escribir a la familia donante les ayuda en el proceso de recuperación y les da la oportunidad de agradecerle por su extraordinario obsequio. Otros beneficiarios, a pesar de estar agradecidos, prefieren la privacidad y deciden no comunicarse con la familia donante. Otros prefieren esperar hasta superar todos los asuntos relacionados con la cirugía de trasplante o hasta que se sientan emocionalmente listos para escribirle a la familia de la persona que les dio el extraordinario regalo de vida.

Si tiene preguntas adicionales relacionadas con este asunto, no dude en comunicarse con nosotros al 800.833.6667.

 

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WHY DON’T THEY WRITE? by Karen Hannahs

“The hardest part of being a donor family is not receiving a simple thank-you note from the recipient. I don’t care who it was (and the donor services told us a little bit about the recipient), but like with any gift, a small thank-you note makes you feel like what you did was well received.” So echoes the thoughts and feelings of many donor families who I work with in my job as Family Support Liaison. One of the greatest frustrations I experience is when I attempt to help a donor family understand why they have not received a letter of thanks from their loved ones recipient(s). Why does one family hear from all of their recipients while another family hears nothing?

Three times a year I help co-lead a group for heart and lung recipients. The attendees of the group varies--some have received their transplants; others are waiting. In speaking with the social worker who runs the group, I’ve learned about the evolution that occurs with a transplant patient. Initially, pre-transplant, they are focused on their illness and getting the best possible organ. If you talk to someone about correspondence at this time, most just can’t wrap their mind around the idea. You can often see a change as they move from getting a transplant, adjusting their medications and attempting to normalize their life post transplant. It is normally at this point that those who are ready to write begin to consider it.

There are many reasons why families don’t hear from their recipients. When I speak to recipients they tell me how grateful they are for their gift. They promise to take better care of themselves in honor of their donor; to take care of their precious gift. Unfortunately, they feel much gratitude, but do not always write to the donor family. If they could only say in a letter of thanks what they say to me. Many recipients feel a tremendous amount of guilt around the issue of receiving an organ from someone who died. I will often hear, “Someone had to die in order for me to live." No matter how many family, friends, and professionals tell them this is skewed thinking, their guilt is powerful and can keep them from writing to their family for a long time.

Fear can paralyze people. One reason recipients don't write is because they are afraid they will hurt or harm the family somehow by “bringing up something they don’t want to think about," the loss of their loved one. Of course, what they don’t realize is that this is a loss that you carry every day. Your loved one’s spirit is with you every day. The irony here is that the donation can be the one thing that can provide a sense of comfort or peace to the donor family.

Another deterrent to writing is the time it takes for the recipient to heal physically and psychologically from the transplant. A recipient has to take a myriad of drugs to avoid any possibility of rejection. This procedure of balancing the amounts needed of the drugs can take months or longer. The trauma to the body and spirit is immense.

Once they do reach a point of somewhat normalcy, many will often think of writing to their donor family but wonder how they can put into words the gratitude they feel for their donor. Combine this with a person who feels they don’t have very good writing skills and the result can be no correspondence.

A few years ago I received a letter from the family of a heart recipient. They told me that their father had died after living 12 wonderful healthy years with his donated heart. After his death they found numerous letters that he had begun to write for his donor family, but then set aside. He just couldn’t find the words he thought befitted a thank you, though he thought about his donor often during those 12 years. His family sent several of his letters on so that the donor family would now see what their gift meant to him. Twelve years later. What a tragedy!

For those donor families I work with who don’t hear from their organ recipients, I encourage them to write the first letter. This can often alleviate many of the concerns and fears the recipient might have about writing to the donor family first. Hearing from the donor family can help the recipient see it is okay to make contact.

For those of you whose loved one was a tissue donor, but not an organ donor, the entire process of correspondence is different depending on the agency that processed your loved ones tissues. Please contact Karen at IDS if this is pertinent to you.

In a perfect world, every donor family would receive a letter of thanks from their recipient, but I realize correspondence is not for everyone. It is my mission, however, to help those that want to write, but may be stymied by their fears. In working with donor families and talking to recipients, I hope to make a simple thank you the norm. Please contact Karen Hannahs either by phone or email; This e-mail address is being protected from spambots. You need JavaScript enabled to view it , or 1.800.833.6667.