Writing to your donor's family - Papworth Hospital

Writing to yourdonor’s familyA patient’s guide

IntroductionIt is our experience that many patients haveasked about their donor and many havewanted to say ‘thank you’ to the family oftheir donor. This leaflet is intended to explainhow such a letter can be written. We will alsoexplain how these letters are processed andwhat may happen after your letter is passedon to the family.It has been shown that donor families reactvery positively on receiving such letters. Themother of a 25 year old donor said ‘you justneed to know how the recipients are doing.I made copies of my letter and sent them tofamily and friends. The letter opened a lotof eyes. More people are going to donatebecause of it’. The husband of another donorsaid ‘it feels good to know that the recipientsof the gift of life appreciate what has beendone for them’.What are the families told?Within seven days of donation, donor familiesreceive a letter from their local transplant coordinatorthanking them for their donation.In this first letter they are given informationon the patients who have received organs,your age and gender, if you are married orsingle and if you have any children. We tellthem how long you have spent on the waitinglist. We do not tell them whereabouts inthe country you live, or divulge any otherinformation that may identify you.The donor co-ordinator will write back tothe family of your donor two months and sixmonths later with an update on your progress.

health. Most people then describe how lifewas before the transplant and explain thepositive changes that have occurred since thetransplant operation.Everyone says their ‘thank you’ in differentways and everyone finds this a very difficultletter to write but we can reassure you thatany letter will be greatly appreciated by thedonor family. The letter should then be givento TCCU staff or given directly to one of thetransplant co-ordinators. They will then passit on to the transplant co-ordinator who hasbeen looking after the family.We have a couple of example letters* to lookat if you need any more help. Alternativelyspeak to a member of TCCU staff.What happens next?Unless we hear otherwise you can assumethat your letter has been passed on to thedonor family. Occasionally the donor familywill reply to your letter, to thank you and toask you to write again in the near future tolet them know how you are. All letters willcontinue to be passed via the transplant coordinatorsuntil a time comes when both youand your family decide to write directly toeach other - this happens very rarely.More informationIf you need any further help or informationplease do not hesitate to contact the TCCUstaff or one of the transplant co-ordinatorson your next outpatient visit.*Examples are shown on the reverse of this leaflet

ExamplesDear friendAt long last I am able to sit down and write themost deserving thank you letter of my life, namelyfor the gift of a new lung to continue and improvethe joys of living which have been denied to me inrecent years.I realise that you have lost a very dear person andmy heartfelt sympathy goes out to you, but I hopethere will be some consolation in knowing your losshas allowed another life to continue, which wouldotherwise have been impossible.My wife and family join me in thanking you mostsincerely for this wonderful gift and wish you andyours all that is good in the years to come.You are in our prayers today and everyday.To the wife of my donorIt seem such an inadequate way to address aletter to someone I owe so much thanks to.There are two feelings you get when the callcomes about a donor organ, the first is a feeling ofelation, at a chance of life, the second, about threeseconds later, is a feeling of guilt when you realisethat someone somewhere has an immense feelingof grief.I was an active, fit, non-smoker, until I developedthe autoimmune disease, Fibrosing Alveolitis.Before I received my transplant I was in a verypoor state, our house was piped for oxygen and Ionly had about three months left to live. After thetransplant, when I awoke everything seemed right,the lung was a perfect fit and felt very comfortable,best of all I could breathe without effort.The doctors tell me I’m doing well.My wife and I thank you very much for thedecision you had to make, at a very difficult time,and I promise to do my upmost to look after thelung and live a long and happy life. We also hopethat you will be able to find some happiness in yourown life at a later date.Yours sincerely

Papworth Hospital NHS Foundation TrustPapworth EverardCambridgeCB23 3RETel: 01480 830541Fax: 01480 831315For more information about Papworthhospital please visit our websitewww.papworthhospital.nhs.ukA member of Cambridge University Health PartnersPapworth Hospital is a smoke free siteLarge print copies and alternative languagescan be made available on request.Author ID: Helen RobinsonDepartment: TransplantReprinted: January 2011Review date: January 2013Version: 5Leaflet number: PI 11© Papworth Hospital NHS Foundation Trust