Agenda Introduction to the Problem What is TNet? Why Adopt TNet? - - PDF document
9/26/2018 Agenda Introduction to the Problem What is TNet? Why Adopt TNet? www.transplantnet.org admin@transplantnet.org How it Works Steps for Implementation Timeline 2 A look from Outer Space Greetings Earthlings Affirmation for
www.transplantnet.org ● admin@transplantnet.org
2
Affirmation for Transplant Professionals
Affirmation for Transplant Professionals
Affirmation for Transplant Professionals
species of animals
people while spending billions on how to save lives
annihilation by the push of a button
“Shall I go on, human? Prepare for elmination”
Affirmation for Transplant Professionals
Affirmation for Transplant Professionals
Great Things Humans Have Done
mechanics, relativity
Affirmation for Transplant Professionals
their own free will, only to help other humans
Affirmation for Transplant Professionals
10
Donor Awareness Efforts,
‐funeral costs ‐flat payment Such proposals are highly controversial with questions of coercion, commodification, ethical challenges‐‐‐Would Gork approve?? How about starting with a THANK YOU? Only about 1 in 5 recipients write thank you letters from UCSF!! Therapeutic potential for donor families!
11
”I’m not sure” “Write a letter and give it to someone in clinic” Paper letter (few instructions) given to providers/SWs to hand for review by transplant center for appropriateness—sent back to patient for corrections if needed. The letter is then sent to the appropriate OPO where the OPO reviews the letter and then forwards to the donor family, unless there is a need for correction—in which case it is sent back again to the patient. Snail mail…. How many of you have hand written a letter or typed one out
12
13
May 2014 Oct 2014 2019 2020 TNet System implemented in Donor Network West and UCSF Received funding to initiate program Now
The System A free online platform providing a streamlined, automated alternative to traditional correspondence between organ transplant recipients and donor families The Mission
families to contact each other
14
15
Online System
letters
recipients to thank donor families
donate
Traditional mail
16
Increased Efficiency
Ensured Security and Confidentiality
Peace of Mind
processed for two weeks in their inbox
Benefits for OPOs and Transplant Centers
17
Peace of Mind
weeks/years to days
Clear Instructions for Correspondence
Benefits for Recipients and Donor Families
Ensured Security and Confidentiality
18
What can you do?
make sure we show our gratitude!
Understanding How to Increase Letter Writing
Other Benefits of TNET
19
Registration Registration Writing & Sending Letter Writing & Sending Letter Review & Forwarding Review & Forwarding Further Connection Further Connection
in TNet user portal
process letters through TNet’s platform
their letters Communication can be carried out afterward if users opt to share personal information
New user is automatically integrated into the system New user is automatically integrated into the system
User is now an option under “Select transplant center” on transplant recipient registration page or “Select OPO” on donor family registration page New user should designate point person(s) in charge of TNet account
Receive new Coordinator Account with username and temporary password Receive new Coordinator Account with username and temporary password
User must set own password upon first login Note: transplant centers can set up different accounts for each of its transplant programs
Request a TNet account through contact form on website or email administrator directly Request a TNet account through contact form on website or email administrator directly
Contact form can be found on website or email admin@transplantnet.org
20
21
families receive a letter of thanks
families receive a letter of thanks Some letters sent on TNet are published, shared through social media Some letters sent on TNet are published, shared through social media General public learns about organ donation General public learns about organ donation People become inspired to become registered organ donors People become inspired to become registered organ donors
shortage is alleviated; lives are saved
shortage is alleviated; lives are saved Affirmation for Transplant Professionals
22
May 2014 Oct 2014 2019 2020 TNet System implemented in Donor Network West and UCSF Received funding to initiate program Service expanded to eye and tissue donor families and recipients Now Expand nationally across U.S. Marketing initiative to make known to patients and donor families
http://transplantnet.org Email us at admin@transplantnet.org to get started.
Email us at admin@transplantnet.org to get started.
http://transplantnet.org
25
Affirmation for Transplant Professionals
Dear Donor Family, I'm writing to you to both give you my condolences for your loss, and my sincere appreciation for the liver I received. This liver has given me a chance to live a normal life again. I’m 38 years old and have been on the transplant list for 3 years with end stage liver disease. I was told my liver was shot at 35 and my doctors and myself had no idea what caused it. Having not even lived half my life and given a possible death sentence was difficult. As of this writing I am still in the hospital a week after the transplant and they say I’m doing good I cannot thank you and your lost loved one enough for this donation and neither can my family. Your loved ones donation is the best thing I’ve ever received and I will cherish it for the rest of my life. Thank you.
26
Affirmation for Transplant Professionals
Dear Donor Family: I am writing to thank you for the donation of organs of your loved one. I am very sorry for your loss and I want you to know that your gift has given me the opportunity to lead a normal and productive life. I needed a transplant because my kidneys no longer worked and I was in dialysis , my wait for this transplant was long. Since the transplant, I have been able to return to my normal life 10 years ago. you and your loved onemade it pissible for my dream to come true. For this, I am very grateful to you and loved one . My family and I will always remember your act of kindness and generosity. I will cherish my gift for the rest of my life. Thank you
27
Affirmation for Transplant Professionals
Dear Donor Family, Sorry for your loss, grief and heartache! Because of your son, I have the miracle of a new liver!! Prior to my transplant, I always prayed for God to provide a new liver in a timely manner and also prayed for the person and family who would provide that liver. It was really difficult to pray this since I did not want to create a loss in order for me to live!! Words do not express what is forever in my heart because of your son’s choice to give life! I did not realize how ill I was until after my transplant and I felt so alive!! I am looking forward to celebrating my 63rd birthday in May and celebrating 6 months of life on April 4. I always just thought the way I felt was from getting
as a Substance Abuse Counselor and even better, get to spend life with my husband, son and young adult grandchildren (my gkids). For this, I am very grateful to you and your loved one. My family and I will always remember your act of kindness and generosity. I will cherish my gift for the rest of my life. May you be blessed always Thank you,
28
Affirmation for Transplant Professionals
Dear Donor Family, “Give, and it shall be given unto you; good measure, pressed down, and shaken together, and running
measured to you again”. Luke 6:38 Hello, I am the person who received your gracious gift of life. Through your kindness and generosity, I am able to live a normal life with my wife) and family. I do not have the words to tell you how thankful we are and at the same time feel the sorrow your family has for your lost. And to godliness brotherly kindness; and to brotherly kindness charity. For if these things be in you, and abound, they make you that ye shall neither be barren nor unfruitful in the knowledge of our Lord Jesus Christ. 2 Peter 1:7‐8 I am xx years old, a hard working individual who believe in treating all people right. Although I do have faults, I feel that I am a good person. I do enjoy traveling with Eden to see and learn things this country and the world has to offer. When I was diagnosed with my kidney disease, I was lost, didn’t know what to do or to expect, but the doctors and nurses carried me through the process. I am so thankful for their knowledge and your generosity. Now, I go through every day with gratefulness in my heart and your family in mind. Thank you very much and may the Lord continue to bless your family.
29
Affirmation for Transplant Professionals
Dear Donor Family I am writing to thank you so much for the organs donation from your loved one. I am very sorry for your loss, and I want you to know that your gift has given me a chance to live a normal, productive life. I needed a transplant because i have had diabetes since i was 13 years old. Which caused my kidney failure. I would feel sick with nausea and vomiting every day. My kidney failure stared when i turned 25 my son was 1. Battling this horrible disease was beyond difficult. So many days i felt like i needed to give up. But i kept a strong mind for the sake of my son. His father left me because he said my sickness was "too much" for him to deal
trying to live for my baby. He is 7 years old now.
30
Affirmation for Transplant Professionals
Since the transplant, I have been able to be more stronger and more positive. You and your loved one made it possible for me to experience life in a much more meaningful way. Now i know i will get to live a long healthy life with my son. For this, I am very grateful to you and your loved one. My family and I will always remember your act of kindness and
thank you enough. My son is so thankful too. He is in shock everyday that passes and says i cant believe my mommy isn’t sick anymore!. I’m truly sorry about your loved one. I wish there was more I could do to help with your heart ache. Just know your loved one is truly my angel and is watching over you now. Their life gave me and my son a new one. I will forever be thankful and live life thinking of you all everyday. I’ve attached photos of me and my son so you can see us. You’re all in my prayers. God bless you and Thank you
31
Affirmation for Transplant Professionals
Dear Donor Family, I have always had you on my mind and want to express how very, very grateful I was to be able to have someone like your loved
aware that this incredible and unconditional gift provides me with the
Last year I was shocked to find by going into the hospital for severe back problems that it was not a hernia, but something called autoimmune hepatic cirrhosis. It is not very common, but a very serious condition which had damaged my liver excessively. At 41 years
to live my life as normally as I could, but patience is a hard virtue to have when it’s your life.
32
Affirmation for Transplant Professionals
Then suddenly in early October a call from my hospital came and set everything in motion. Almost four months have passed now and my recovery gets better day‐by‐day and it could not have happened without him or without you. Every day, from surgery to now, I remind myself how blessed I am and how incredible it is that someone like him chose to save someone else, a someone like me. As a donor myself, I can only hope that one day I can also provide the same relief to another and their loved ones as well. I cannot seem to find the best words to express my supreme gratitude other than to say thank you. Thank you and bless you. Additionally, my wife kept a blog during the process of recovery which you are more than welcome to check out. https://hipaa.wordpress.com/
33
Affirmation for Transplant Professionals
Dear Donor Family, I’ve been so blessed to have a second chance at life. Thanks to my wonderful donor and family for giving me this wonderful gift of life!!! I’m so sorry for your loss and I hope you can find somewhere in your heart to accept my thankfulness for your gift to me. You have made it possible for me to spend the rest of my life with my family. I can now see my daughter graduate and walk her down the aisle some day and watch my grand kids grow up now that your family has given me this wonderful gift of life! I can help and guide my son down this bumpy road of life, to make the right choices that are put in front of him. So thank you and your family! I’ve been married to my wife for 28 years. We are both very appreciative of this gift that you have given us. We can grow older together like we had planned since we were teenagers, watch
THANK YOU SO VERY MUCH FOR THIS GIFT OF LIFE that you and your family have given me and family! May God bless you. Because he has blessed me with this second chance, I will take care of my gift and cherish it for the rest of my life. Thank you and may God bless you and your family.
34
Affirmation for Transplant Professionals
Dearest Donor Family, I am writing this letter to thank you for you amazing gift to me. I am so sorry for your loss. I can only imagine the difficulty of the decision to donate while in grief for your loved one. Your generous gift has given me a new life! I feel better than I have in over 15
I had primary biliary cirrhosis or PBC. I was first diagnosed 10 years ago. They tell me as of yet they have no definitive cause for this disease. It sure came as a shock to me. A month ago I was thinking that my life expectancy was grim. Now I have a new life, thanks to you and your amazing gift. I call my new liver ‘my lil buddy’ … silly, I know, but it makes me feel so good when I give myself a hug and rub my hands over my liver and say THANK YOU FOR MY LIFE!! I have hopes and dreams again. My husband and I are so happy. He’s been so worried about me for so long, and it’s so great to see him hopeful again. Words just don’t seem enough to express how very thankful and humbled I am for this gift! Forever in your debt!!
35
Affirmation for Transplant Professionals
Dear Donor Family, I am writing for my father who have received an organ donation from your loved one. My father and I want to express our gratitude. He is slowly recovering but is grateful to have this opportunity to have this transplant. I am about to graduate from a public university and I know my father and mother have been fighting to be able to see this day. I am thankful that they are able to see this day and to be able to experience more. I was raised to understand that family means everything. The past four years in college I have been struggling to balance taking care of my parents and school. They have given so much to me and I want to be able to return the same. Being that they are retired, I want to let them relax while I do the work in the family. Again, I am very grateful my father was able to receive an organ donation. We are grateful to you and your loved one. My family and I will always remember your act of kindness and generosity. I will cherish this gift for the rest of my
immensely in the lives of others.
Email us at admin@transplantnet.org to get started.