Letter to donor family: I'm not sure how to start

Posted by edwinswife @edwinswife, Tue, Jan 15 2:22am

im not sure how to start it .. what do you guys think so far
is this too much information ..im not sure how to thank them i just know its something i really want to do ..

My husband was the 26 year old male who received the precious gift from your loved one ..i know there are no words that can express mine and my husbands feelings for your family ;it takes a very special kind of person to make such a sacrifice in their time of grief and need.. I continue to keep you and your loved one in my prayers I wanted to tell you a short summery of who my husband was …My husband had diabetes since since he was 9 ..he was on insulin injecting 3+ times a day ..when I met him his diabetes was very uncontrolled and after a couple years it messed up his kidneys and on November 2016 we were given the horrific news that he was going to need dialysis to basically keep him alive ..as you can imagine its not something a young person who is just starting his life wants to hear ..we were both heart broken we knew it was going to be tuff specially with the survival rates … he wanted to live so bad ..he wanted another chance he wanted to be healthy but at the same time he was tired of hospitals ,injections, treatments and now dialysis… I did my best to encourage him to keep going forward and to never compare our lives with other peoples .. it was going to be tuff but i always told him GOD IS BIG and he loves us he will cure him and he will live a happy life ..my husband never missed a treatment and we signed up at two different hospitals to get the gift of life with a donor .. I did try to give him one of my kidneys but because of my low weight I wasn’t able to also because doctors recommended he get a pancreas and kidney to cure his diabetes as well as his kidney disease ,he honestly struggled a lot during that waiting time there was a lot of times he would end up in the icu due to his illness a lot of hospital stays ..he went from having a caterer on his chest that was connected to his heart to a new better form of dialysis that didn’t drain him as much ..he started doing peritoneal dialysis it’s a form of dialysis done at home instead of 3 times a week at a hospital …he had a catheter on his lower stomach and he would connect to a machine that would do the job that hs kidneys couldn’t do anymore .. it was a 10 hour treatment we would do it over night but it was still hard on his body he was on many medications for blood pressure as well … we had to go to the hospital a couple times during each month and he would get monthly labs to make sure his dialysis was working okay .. let me tell you it was so hard he was always sad and scared of passing .. he wanted to live more than anything …we were so in love he wanted a normal life ..grow old have a family with me and just be hospital free .. we found out the waiting list at Loma Linda for kidney-pancreas organ donation is 10 years ! …he didn’t believe he would live that long … but months after that on November 2017 his doctors recommended him at mayo clinic in Arizona ..we were told the waiting list there is shorter so we signed him up … on February 14 2018 valentines day we finally got married …something we wanted to experience together …me 23 years old and him 25 .. on march 2017 we found out I was pregnant .. we were both very excited and now had more reasons to keep going and on may 2017 mayo called and told us they had a donor .. we rushed to mayo and he got your gift of life and let me tell you your loved one really changed his life .. the organs were a perfect match and worked right away .. he was no longer a diabetic he was able to drink a soda and not worry about insulin injections or feeling sick afterwards .. the kidney worked right away as well and he didn’t need dialysis any longer ! your beloved ones gift of life changed my husbands life completely .. you have no idea how much .. my husband was living a “normal” life now and all his doctors always congratulated him and thanked him for always taking care of that precious gift ..my husband never missed an appointment and always did what the doctors wanted him to do to keep them healthy .. please know that he took great care of them and was thankful everyday … we would thank god for the new life my husband was privileged to have and pray for your loved one and your family as well … Edwin is my husbands name .. he wanted to write this letter himself but on November 2018 he had an accident ..not related to your loved ones donation .. it was a fall ..he passed away as well.. I was 8 months pregnant at that time .. I share your pain .. but your loved one had a purpose just like my husband and your loved one is so amazing he gave my husband 6 months of a normal life thanks to your gift … he was happy he was always smiling …he got to eat all kind of things he was neer aloud to have and let me tell you he was so thankful in every bite ..he got the chance to go back to work and he developed a new interest in deers .. he enjoyed eating meat a lot and he was even more loving and thankful for life .. although he didn’t get the opportunity to meet you guys to thank you .. he left a beautiful baby girl and me behind to do so for him ..i know it was in his to do list he just wanted to to wait for the right time to do so ..you know our baby looks just like him and I just want you guys to know who he was ..that your loved ones gift went to another angel like your loved one he was a donor as well and now 4 more people were given a new chance at life with his organ donations … nothing I say will ease your pain and I can never thank you enough for the big impact your loved one made and continues to do so in our lives .. my husband was a fighter a real warrior and an angel just like your loved one .. if you’re interested i would want to know at least a little of the person who gave my husband and myself that enormous gift of life ..whatever your decision is I respect it I will keep you in my heart forever and in my daughters as well. Thank you

@edwinswife Welcome to Mayo Connect. I am truly sorry for your loss. It sounds like you and Edwin had a beautiful relationship. Your transplant team will be able to give you some additional input on the thank you letter, and usually has specific guidelines. Let me make a couple of suggestions. A letter does not have to be long, so as you read and reread it, you will probably find things that may repeat, that can be trimmed down. They advise there should be no names used, as everything is anonymous. When you are finished, your team will take the letter you give them, in an unsealed envelope. Whether or not the donor family responds to you, please know that it does you good to have done the letter. My husband wrote a letter to his donor family after his kidney transplant, but has not heard from them.
Ginger

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@edwinswife, Welcome to Connect.
I extend my sympathy to you on the passing of your dear husband. Your letter is a testimony of tremendous love and committment that both you and he shared during your brief time together. At your young age, you have been blessed with a love that is bigger than life itself, and your letter makes that very clear.
I am not an expert, nor do I have any claims of knowing what a letter to donor should look like. My opinion is that you have spoken from your heart and have expressed what your husband experienced. My first impression was that it was long and wordy, however, after reading it, I know why it has to be this way. Your husbands journey – that you have written – with all of its difficulties is filled with hope, love, and life. I have not ever heard of another story like this that creates such a continuing cycle of living. Some of what you and he experienced touched me deeply as I was able to relate to it. I wish I could give you a big grandma hug right now.

Here is another discussion about letters to donors that I want to share with you. You can see what others have shared about their letters.
– Writing to Your Donor's Family.
https://connect.mayoclinic.org/discussion/writing-to-your-donors-family/?pg=1#chv4-comment-stream-header
I had to let my letter rest for a while, then go back and edit it again. I also had someone read it and help me with some editing. I felt great relief when I did mail it. I was fortunate to receive a response from mu donor's nother. But, I have learned that that does not happen very much.

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Wow!

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@edwinswife I am so sorry to hear of the passing of your husband. At least he did have six good months after his transplant.
Your letter is heartfelt and caring. I am sure the family of your donor will appreciate it.
Like @rosemarya I too spent a number of days looking back and editing my letter. You may want to have someone else close to you do that, it is often easier for someone else to suggest modifications than it is for the writer.
Here is a guideline I received from New England Donor Services. It does not say you absolutely should not put names in, that is a personal decision in their opinion. Another guideline I had, suggested to only sign and put your first name. You probably received a guideline from Mayo.
JK

Letter to Donor guidelines

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@edwinswife Thank you for sharing your story. I am sorry for your loss.

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@lisaphx

@edwinswife Thank you for sharing your story. I am sorry for your loss.

Jump to this post

Hi, lisaphx. Welcome to Connect. Mayo Connect is an online community where anyone can share experiences and find support from people like themselves. Are you a transplant patient? Or a cargiver? or a donor family member? Whatever your role, I invite you to participate in any of the Mayo Connect discussions.
I look forward to hearing from you, and I am available if you want some help getting started.

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In reply to @estrada53 "Wow!" + (show)
@estrada53

It is good to hear your voice, estrada53. I hope you are doing well.

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@edwinswife I'm so sorry for your lost. I can't imagine the rollercoaster you have been on this past year. The donor family will love your letter.
Blessings,
JoDee

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