Bob Aronson

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The Letter to Your Donor Family. The Most Important Thank You Note You Will Ever Write

In To My Donor Family on September 22, 2013 at 3:14 AM

By Bob Aronson

thank you cartoonOne of our most popular blogs is “ The letter – how to write to your donor family.”  http://bobsnewheart.wordpress.com/2012/11/14/the-letter-how-to-write-to-your-donor-family-2/

It is so popular (scores of hits every day) that we thought it might be helpful to offer more examples of transplant recipient letters to their organ donor families.

Before we get into the letters, though, let’s quickly review the criteria for writing a letter to your donor or donor family.  I checked a half-dozen highly respected organizations for their advice to letter writers and they all say pretty much the same thing.

As an example we’ll use the advice from LifeShare Oklahoma http://www.lifeshareoklahoma.org/family/donor.php Here’s what they say:

Writing to Transplant Recipients and Donor Families

The decision to write to the transplant recipients or donor family is a very personal one, and may not be right for everyone. Sometimes, donor families and transplant recipients choose to correspond to share information about themselves and their loved one. For some families, this sharing helps with the grieving process and also allows transplant recipients the opportunity to express their gratitude for the gift of life.

If you would like to write to your donor family or transplant recipients, here are some general guidelines to help you.

Provide General Information:

  •  Keep identities anonymous and confidential.  Avoid including any last names, street addresses, city names or phone numbers.
  •  You may want to include your name or your loved one’s name (first name only) as well as information about you/their job, family and friends, hobbies and interests.
  • If you are including religious comments, please consider that the religious beliefs of the transplant recipients or donor families are unknown.

Closing your letter

  • Identify your relationship to the donor or recipient, for example donor mom, donor wife, transplant recipient, recipient’s mom, etc…
  • Sign your first name only.

Mailing Your Card Or Letter:

  •  Place your card or letter in an unsealed envelope.
  • ·Include a separate piece of paper wih the donor or recipient’s full name, date of donation or transplant, the hospital where the donation or transplant occurred and our full name and relationship to the donor or recipient (Also include your contact information to be used by the hospital or your OPO).
  • Place these itemsin another envelope and mail them to: Editor’s note…Check with your transplant coordinator as to where they letter should be sent.  Should it go to the coordinator, the OPO or somewhere else).

Allow Extra Mailing Time:

  • It may take a few weeks after you’ve mailed your card or letter for the donor family to receive it. Letters will be reviewed to ensure confidentiality

Writing the thank you letter is a difficult task at best because you are writing to a total stranger about whom you know nothing while trying to show humility and gratitude.  That’s not easy so we searched the internet for examples and found these that seem to hit on all the necessary points.

PLEASE NOTE…the advice above is well considered and time honored but there is always more than one way to accomplish an objective.  Below you’ll find letters that follow the guidelines but on occasion stretch them a bit or cut some corners.  The best advice Bob’s Newheart can give you is this,  Remember always that you are writing a letter to the loved ones of someone who died and gave you the gift of life.  The letter is being written to thank thank them.  As in all communications your message has a better chance of being gratefully accepted if you write it wiht the audience clearly in mind.  Put yourself in their place. What would you like to hear from the recipient?  Once you know that, then you should write your thank you letter from that perspective.

Clearly, wrriting the thank you letter is a difficult task at best because you are writing to a total stranger about whom you know nothing, yet you must show both humility and gratitude.  That’s not easy so we searched the internet for examples and found these that seem to hit on all the necessary points.

First – from the Gift of Hope http://www.giftofhope.org/for_the_public/donor_families_recipients/sample_letters/donor.htm

Dear Donor Family:

I am the 28-year-old male who received the precious gift from your loved one. I know that there are no words that can truly express my family reading letterfeelings for your family; it takes a special kind of person to make such a sacrifice in their time of grief and need. I would like you to know that your loved one and your family are in my thoughts and prayers every day. I know I will never be able to thank you enough for giving me a second chance at life. I can promise you that I will try to live up to the example set by your loved one and help other people.

I thought you might like to know how things are going. The doctor says everything is progressing extremely well. I have had no signs of rejection and the kidney is functioning extremely well. It has been about two months since the operation at the time I am writing this letter. I would have written sooner, but I wanted to make sure everything was working out so that I could show you what has been accomplished by your family’s decision to donate.

I would also like to say how sorry I am for your loss. I would give it all up to put your family all back together again. It is nice to know that there are such special people in this world who care about other people so much.

Saying thank you just doesn’t seem like enough when what somebody does is basically save your life. I sincerely hope that life treats your family to nothing but happiness and prosperity. If there is anything you would like to know about or from me, please don’t hesitate to ask. I just want to say thank you again.

God Bless You.

Signed,
One extremely grateful man.

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The following letter was written by a double-lung recipient to
his donor family:

Dear Donor Family,

For the first time in more than two years today, I was able to walk more than three miles without being short of breath. Just a week and a half after my lung transplant, I was able to walk over a mile without my fingers turning blue, or having to rest every few steps. Just woman writing letter at computerunder four weeks ago, I could barely walk around my apartment without being constantly hooked up to oxygen. My life was drastically different four weeks ago.

My name is Eric and I am a graduate student in Illinois studying speech and language pathology. Before I received my transplant, I was looking at the possibility of being unable to finish graduate school, having to withdraw from my program of study, as I was unable to do little things without the constant support of supplemental oxygen; even with oxygen, I became short of breath and had to stop my daily activities. Since the transplant, I haven’t required any more oxygen and I am back to many of my daily activities. As soon as I finish recovering, I plan to return to classes and resume my clinical responsibilities. With any luck, my return will come some point during this fall. Upon finishing my graduate degree next summer, I intend to take a clinical fellowship position and then possibly continue my education in medical school.

In addition to my life as a student, I am an avid photography enthusiast. Over the past two years, my ability to participate in my photography had dwindled to nothing. With time, I intend to become active once again with my photography. It is an activity that I have missed so much since my illness began taking over my life over fours years ago. I cannot wait to take the trips that I had to put off, and I cannot wait to be able to carry my own gear and camera without the assistance of others.

Despite having difficulty breathing since my freshmen years of college, I had no idea how sick I was until just over a year ago. I had noticed that I was having increasing shortness of breath doing simple tasks, and was given a variety of reasons about why I was having difficulty. The guesses kept coming and so did the worsening of my condition. A routine chest X-ray last summer, almost one year to the day that I received my transplant, following a bout of bronchitis showed substantial abnormalities. Over the course of the following two days, my life crumbled. I was admitted to the hospital where various procedures were conducted, and more than one doctor told me that I would likely be dead and definitely crippled within a few years if nothing was done quickly, but none of the doctors knew what was causing the problem. All anyone knew was that my lungs were becoming scarred and inflamed and they were quickly losing any residual function.

By September 2003, I knew that I would need a transplant if I were going to survive much longer. My lung disease was progressing rapidly and not responding to any of the drug treatments that I was offered. In late November I began the process of being added to the UNOS waiting list, and by the first week of December I was listed.

Over the months, my life was put on hold as my condition quickly deteriorated. I was told that I was lucky to be transplanted so quickly, but I do not know how much longer I could have lasted emotionally. Those months were a huge strain on my family and me. I was in Illinois and my family was in Florida. When I was dealing with the emotional roller coaster of my family, I was buried in work from my classes.

This past year I missed so much of my life. My personal life was non-existent, and I spent my time sleeping, studying or eating (and sometimes just sleeping because I had no energy to do anything else). For the first time in eight years, I was unable to volunteer as a senior staff member at a camp for children with diabetes. Camp had become a home away from home for me and being unable to attend was incredibly difficult for me emotionally. I sat tethered to my tank, while friends from camp called to wish me well, not sure if I’d ever make it back for another session. I also had to stop volunteering for the Red Cross, where I had previously been a CPR for the Professional Rescuer and Lifeguarding Instructor. I spend much of my volunteer time at the Red Cross teaching nurses, paramedics, lifeguards and other professionals how to perform CPR and administer oxygen. As soon as I heal from the transplant, which will no doubt take some time, I plan to resume all of these activities. Without your generosity, I might never have had these opportunities.

I have been given a second chance at life, and I have no intention of wasting a second of it. With some physical training, since my lung disease took severe toll on my physical condition, I hope to complete the Hustle Up the Hancock in Chicago next year, where participants climb 94 stories of stairs to observation deck. Before my transplant I could barely climb one flight, 94 stories would be a huge accomplishment. Right now, however, I am happy just to be able to climb one flight without becoming short of breath. Even this ability is new since the transplant. Last month, I was taking the elevator everywhere or stopping every five steps to stop and catch my breath. Keeping up with my friends and colleagues was impossible.

While I know your decision to donate your loved one’s organs must have been very difficult, I also want you to know what a difference your decision has made in my life. I now have the hope of living a more normal and active life. Regardless of how normal my new life ends up being, it will be a better life than what I was living, and I will be alive. I will never be able to fully express my gratitude to you for giving me this opportunity. I realized that you are going through a difficult time with the loss of your loved one and I respect your right to privacy, but I would really like to know where the miracle that I received came from. I have absolutely no information about your family or loved one. I hope the information that I have provided to you brings you some solace that some good came out of this tragedy. Thank you for making the decision to save my life, the life of someone you have never met.

With inexpressible gratitude,

Eric

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University of Miami http://surgery.med.miami.edu/laora/donor-family-services/donor-family-and-recipient-communication/

Sample Letter:

Dear Donor Family,

It has not been (3 month, etc.) since I received a heart transplant. one finger on keyboard I want you to know that I continue to give thanks each day for this gift of life and think of you and your family often. I am sorry for the loss of a loved one. I know how hard it must be to live without him/her. I hope you can find some comfort in knowing my life has changed because of your generosity and compassion. I have returned to college and will be celebrating my 24th birthday next month. It would be great to meet you one day if you feel comfortable with that (optional). My greatest thanks for a second chance at life.

Sincerely,
Peter

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http://www.chabad.org/theJewishWoman/article_cdo/aid/754848/jewish/Letter-to-My-Organ-Donors-Family.htm

Dear Family,

I am sure this letter may be difficult to read. It is difficult to write. It is both painful and joyous. The reason I am writing is to thank you.

“Thank you” is an expression which is used quite often and sometimes just in passing. This is a different kind of “Thank you.” It is a “Thank you” that defies English, French or any language.

How do you say thank you that means that because of you and your daughter, I am alive to speak any words at all? I am alive at fifty-one years to continue living.

My promise to you is that I will never waste one moment of my life The importance and immense meaning of the gift you and your daughter have given me, truly cannot be expressed in words.

I can try, though. I must try, because I think you should know that this life that was saved is a life of promise. My promise to you is that I will never waste one moment of it.

I have two grown children of my own. I am a mother, a musician, an artist and a spiritual person.

If you can imagine it, before the gift your daughter gave me, it was becoming very challenging to do anything in my life. Brushing my teeth required effort. Eating became difficult. Even with oxygen, I still had to be in a wheelchair if I wanted to go out.

How do I share with you that you gave me life back? That you gave me a better life? My children and my husband thank you. My friends thank you.

And I think you should know that not one day goes by that I do not think of the generous spirit of yours, and of the woman who enabled me to breathe again.

There is a television commercial that says, “When you can’t breathe, nothing else matters.” That is, indeed, true.

To add to that, as a singer and a songwriter, I thought my music was gone forever. As a mother, it became more difficult to see the pain in my children’s faces.

I want you to know something else.

When I got the call they had found a donor for me, and that this person was a young woman, I thought of my own twenty-two year old daughter, who rode with me in the ambulance to the hospital for the surgery.

I cried during that whole ride to the hospital. Not because I was scared or happy. I cried because I knew that on that day, somewhere, a family lost a precious, beloved person in their life.

My heart was with you and is still with you.

She is with me, literally, with every breath I take.  On a more positive note, please know that this woman, who gave me the gift of life, is my hero. I literally owe my life to her and to you, who had the bravery and strength to allow this procedure to take place in the midst of your grief.

Please believe me when I tell you that, to me, your daughter is an angel. She is on my shoulders; she is like a butterfly in my garden. angelShe is the music inspired by Beethoven; she is a painting from the heart of Da Vinci. She is the Book written by the hand of G‑d; she is a rainbow and a sunset. She is the most beautiful person I have never known, and I carry her within me. Every day.

Yes, please know that her spirit lives. I hold her in my heart. And she is with me, literally, with every breath I take.

May G‑d Bless You for giving me my life back. For giving me a new life with no more pain. A life where I don’t have to fight for every breath I take.

I love you without knowing you and I am here as living proof that life goes on.

I promise to take good care of her. I promise to honor her with everything I do, especially for others who have suffered like me.

If you have any special requests at all, just let me know.

With all my heart, I wish you peace. I wish you love. And above all, faith in knowing that this beautiful woman has allowed me to live again.

Your daughter, in life and in spirit, is a miracle. I am her miracle.

Thank you.

With all the love from the deepest part of my heart,
M.P.

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http://www.heart-transplant.co.uk/donorletter.html

Sample Letter

Dear Donor Family,

“ Thank You” these two words seem so
inadequate for the gift of life you have
given to me.

You have given me a second chance to
live and many tomorrows. I will be able to
see the sun rise and set, feel the rain and
sun on my face, hear the wind in the trees,
and listen to the birds sing. I will be able
to hug and be hugged.

I must offer my deepest sympathy for
your loss, mere words from a stranger, but
heartfelt just the same. Perhaps, in your
generous donation your family and mine
will be able to “Celebrate the Life” of loved
ones both past and present.

I know nothing about the donor only
that they must have been kind, caring,
compassionate, and generous, something
they had to have learned from you, their
family.

I feel that each new day has endless
possibilities, and that my horizons are
without bounds. I only hope that I am able
to justify the use of this wonderful gift.

I could make you promises of what I
would do to make our world a better place,
but we all know that promises tend to be
broken and time can cause us to forget,
but know this, not a day, not an hour, or a
minute will go by without my thinking of
the donor and their family who without I
would not have had a chance to live.

Thank you from the bottom of my heart.

The recipient

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News Story

A mother who was brought back from the brink of death by a liver transplant days after giving birth to her daughter is among dozens newspaper headlineof people whose moving letters of thanks to their organ donors were published yesterday.

By Heidi Blake

7:30AM GMT 10 Nov 2010

Helen Eccles, 49, was eight months pregnant when she went into acute liver failure in 1996. Two days after her daughter, Ella, was born, she received a life-saving transplant in an operation that left her in a coma for 18 days.

Now she has written to thank the family of the 54-year-old woman who donated the liver that saved her life.

Her letter is among dozens in a new collection, Thank You For Life, which was published yesterday by the Royal College of Physicians. The book is designed to encourage more people to donate their organs by showing how transplants can transform lives.

Mrs Eccles, an artist and life-coach from Putney, south London, said: “I nearly died, but I had something wonderful to live for, and that was my determination to mother my baby.

“That family allowed me to live, and be a mother, and see my baby grow up. How many thank you letters do you write where what you’re thankful for is your life?

She first wrote to her donor’s family a year after receiving the liver that saved her life.

The letter began: “I feel very guilty that I have taken so long to write and thank the donor’s family, but it has not been an easy letter to write. Now, however, I hope that around the anniversary of her death my letter will go some way towards alleviating the enormous grief they must feel.

“Without the transplant I would certainly have died leaving my husband to look after our newborn baby on his own. Like most transplant patients the gift of life has been amazing and words can never express just how grateful we really are.”

In her most recent letter, 14 years after the transplant, she thanks the donor again for giving her the chance to see her daughter grow into a “beautiful teenager”.

The collection was inspired by one letter written by a woman in her sixties called Joan to the family of a younger woman who had donated her liver.

The letter, which was read out by Joan’s grandchildren at her funeral, says: “I think you know that I am in my sixties. It must have been a disappointment to you that it was not a younger person’s life that was saved. And I was shocked to know that such a young life had contributed to mine. I can only say that I treasure the thought of her life, and feel so privileged.”

Rita Simmonds received three letters from patients whose lives were saved by her daughter Rachel’s kidneys and liver after the 31-year-old died in a sky-diving accident eight years ago.

The 63-year-old, who lives in Christchurch, Dorset, said the letters had helped her come to terms with her grief.

“It gave me a different perspective,” she said. “I realised that my daughter’s death had helped people and, although I was grieving, at least there was just one family in mourning instead of four.”

http://mervsheppard.blogspot.com/2010/09/organ-recipients-heartwarming-letter.html

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Thurs, Oct. 15, 2009
To my donor and their family,
I don’t know who you are, or where you’re from, or how it all happened, but I do know this: whoever you are and whoever you were, you are a hero and you saved my life. To you – the family – by choosing to honor your loved ones wishes; you enabled me to have a life that I never dreamed possible. Because of all of you, I am breathing with two beautiful, perfectly healthy lungs. Because of you, I lived to see my 24th birthday.

Early in the hours of August 7, 2009, I received the much – anticipated ‘call’. After waiting 15 long months on the transplant list, I was beginning to think that it just wasn’t meant to be and that I would be that 1 statistic who would die waiting. I was 23 years old and that was my life. I had a condition called Bronchiectasis, which is the build-up of scar tissue in your lungs, the stretching of your airways, and the destruction of the tiny hair cells that are responsible for removing dust and debris. As a result, the elasticity of the lungs is destroyed and your lung function drops drastically (a week before my transplant my function was 21% out of a predicted value of 100%). Additionally, I was constantly ill with life-threatening lung infections and was on about 5 inhaled and oral antibiotics at a time. With that was the issue of fluid build-up in my lungs. My lungs were so diseased that I didn’t need a stethoscope to hear them; all I had to do was breathe ‘normally’ and the room would fill with the sounds of crackles, wheezes, pops, and other bizarre sounds. My friends joked that I sounded like a rainforest.

I was on oxygen 24/7, and simple tasks like putting socks on, showering, putting shoes on, getting in an out of the car left me gasping. Sometimes, even shifting positions while sitting on the couch left me so out of breath I felt like I would pass out. Next to the gasping was the chronic coughing. I coughed so much that people could identify me simply by hearing it. I couldn’t even laugh because I would be thrown into a fit of coughing and would be unable to catch my breath. As a result, I simply could not fathom a life with perfectly healthy lungs – lungs that didn’t debilitate me in each and every corner of my life. To take a deep breath in was something I had never even had the joy of experiencing…until now.

I don’t know if ‘thank-you’ can truly encompass just how grateful I am for this gift called life. To be honest, I don’t know if I will ever truly be able to wrap my head around this fact: what have I done to be so lucky and so blessed to receive such a precious gift? How can I celebrate each and every day knowing that with every breath I take, there is a wonderful family out there grieving, and I am benefiting from their loss? If there is one, (out of many) things I want you to know, it’s that with every breath I take, I say ‘thank-you’; with every new experience I am fortunate enough to be part of, I say ‘thank-you’. Every morning I wake up, I say ‘thank-you’. Every deep breath I take, I relish. I cannot describe to you the elation I feel when I feel these beautiful creatures expand in my back and inflate all the way to the bottom of my ribcage. To normal people they probably don’t notice something like this, but it makes me stop every time it happens, and I find myself doing it again, and again, and again, just because I can, because it feels good, because once upon a time, I couldn’t. Because taking that breath means ‘life’, and it’s the reminder that due to a complete strangers generosity when their journey on this Earth was completed, they had the forethought to consent to donate and to let someone else benefit from something they enjoyed just as much.

How can I possibly say ‘thank-you’ for something like that? 8 letters isn’t long enough. 8 letters isn’t enough to grab onto all the emotion that I’m feeling as I write this. It isn’t enough to encapsulate the emotions I experience day to day when my donor crosses my mind.

There is much that I want to do to make the most of this amazing experience. I had to take a leave of my university studies when I got listed, and am hoping to resume them in the winter and complete my degree next fall. I want to travel to destinations far and wide. Most exciting of all is that I want to partake in the 2011 World Transplant Games in Sweden in 2011!! It isn’t so much the big things that are most frequently showing up on my list, but the small. I walk daily – for hours on end sometimes – just because I can and because it is so effortless. I look forward to when I can dance again as well. I am looking forward to going to beach with friends and celebrating the small things that took every ounce of effort I had just 2 months ago. But I have to say that next to loving every breath I am fortunate enough to take, laughter is right up there as well. I love laughing now. Gone are the days of the ‘smile and nod’ technique when something funny happened, because if I let myself laugh out loud I would only be rewarded with a huge, disgusting coughing fit. Now – even though no sound comes out yet – I can laugh, and laugh to my hearts content and it feels wonderful. I talk louder, I yell louder (ha ha), and I eat faster because I can breathe and eat at the same time now!! I am also enjoying new things that I never liked before, like seafood. I couldn’t stand the smell or even the thought of consuming a sea creature prior to transplant, but now I fear if I ever go swimming in the ocean, I may just eat something right off the ocean floor.

It is hard for me to think of what to write next, what else to elaborate on because there is so much and yet not enough. While my progress has been wonderful and I’ve been fortunate enough to have no complications, I know that out there you are grieving. If there is one thing I would like you to know, it’s that in all of this, I have not forgotten you, the family. I have lost friends both pre and post transplant, and I also lost one of my best friends in high school, who ended up being an organ donor herself. She alone saved 11 people, so in one small aspect I understand the organ donor card on both sides, being the friend of a donor and now, a recipient. Throughout it all, one thing remains the same: you do not forget.

I guess I should end this letter. I hope that in the process of reading this I have neither hurt nor offended you in any manner. That is not and never was my intent. I would love to hear back from you, but I completely understand if you choose not to respond. Please know you are in my thoughts and prayers daily, even though that most likely doesn’t make your loss any easier. I wish you all the best, and hope that each memory you have of your precious loved one brings a shine to your eyes, laughter to your lips, and a smile big enough to light up the room.

To my donor: I don’t know who you are, or what happened, but I do know this: you are a rock star, and a hero to me. I hope that wherever you are in your after life, that you landed on the shiniest star and got the best seat in the House.

Much Love to You, B.

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Friday, August 6, 2010
Much like a child carries around and protects their favorite stuffed animal, I have done the same with your letter. Ever since receiving it on August 3rd, it has not left my sight or my hands. If I leave the house, it comes with me. If I go to bed, it sleeps on my dresser. And anyone who knows me, has read it and been brought to tears by the things you so kindly shared with me.

A year ago today I can recall exactly what I did: I baked 2 loaves of bread, one being cheese and onion. I had caught up on phone calls and emails and was mentally making sure everything at home would be okay. I knew I was dying. I couldn’t brush my teeth and breathe at the same time without having to lean over the counter and rest to take a breath. Using 5L of oxygen didn’t matter – I simply couldn’t do it anymore. I was simply exhausted in every which way imaginable, and the sheer physical pain of feeling your lungs shrivelling up and dying within you was unfathomable.

I was just 23 years old, and this was my life.

At 12:45am on August 7th, the phone rang, saying that a pair of lungs had become available for me. We rushed to Toronto only to end up waiting 18 hours until surgery began. In that time we sat and waited in a freezing cold ICU room while everyone around me ate Tim Horton’s and I could only feast on ice chips. The hours dragged on, but I knew everything would work out. And it did, and continues to do so, because of your husband and father and your selfless act of honoring his wishes to donate his organs.

One year later things are very different. I am healthy, I am pink, and I am breathing the way a normal 24 year old girl should. This morning I woke up bright and early and took one of our dogs for an hour and a half walk with my sister. Then I made a cup of tea and lounged on the couch with the other dog and watched Shark Week. My how things have changed.

But the thought that somewhere out there your family continues to grieve is enough to bring me to tears. You will never know what your donation has done for my family and I. I cannot put into words how it feels to take a deep breath in and feel it resonating at the bottom of my lungs. Seeing my chest rise and fall the way it should, instead of having it never move and breathing with my stomach as I used to never seize to amaze me. It is a sensation that will never grow old.

In two weeks, I will turn 25.

Your letter gave me so much information that I will cherish always. I am excited to compete in the World Transplant Games in Sweden 2011, and ironically enough (even before I received your letter) my sport/event of choice was cycling. I’ve always loved it, and just recently got back into it. If cycling doesn’t work out I will most likely compete in one of the walking events. I love to walk, and I can do so for hours on end without any destination in mind, just so long as I can be moving and enjoying nature around me.

The day I received your letter I was up North with my dad, and he was showing me the town he had grown up in. We were at the dam he used to swim in when I suddenly burst out, “we could have gone fishing!” which is bizarre, seeing as I’ve never expressed any interest in ever doing so, and will be the first to admit that the thought of catching let alone touching a fish is enough to make me scream and gag all over the place. But in that moment, I was overtaken with the urge to go fishing, and then I got your letter in the mail that night and read that fishing was one of your beloved’s passion. Needless to say, now I must go fishing!

This fall will see me finishing up my anthropology degree. Ideally, I would love to work in a hospital dealing with patients waiting for transplant. I just need to be doing something that gives back and helps others, in any way shape or form. It has become a passion of mine and I do not mind being a voice and face for transplant.

In my spare time I love to write, and I have a blog that chronicles my transplant journey from the moment I found out I needed one up until now. I will continue to write it for as long as blogs are around! I also love to read – I think I love to read almost as much as I love to breathe – and, I never leave the house without a book in my purse. Genre of choice has to be historical fiction, and my favorite series of all time is Diana Gabaldon’s Outlander series. The best thing in the world to do on a rainy weekend is to wear your favorite pair of sweatpants, and a sweater, with an endless supply of tea, curled up with an amazing book that you can get lost in. I love losing all sense of time and being enamoured by an author’s ability to make all time and space fail to exist around me. Next to this, is reading out on the deck on a warm summer’s night, with the stars above to guide your eyes. That is my favorite passtime.

As for projects, my dad and I are embarking on a genealogy journey, tracing all sides of the family. Needless to say, it’s a frustrating and rewarding process, and a fascinating one at that. I love learning about where I came from, and how we got here, and when we did. I feel that it is imperative to know your roots.

summerSummer is my favorite season, with fall coming in second place. I love sleeping with my window open on a cool summer night, with the blind all the way, so that when the sun rises in the morning to wake up the world, I can be witness to it time and time again. As for fall, I love the colors, and the smell of the leaves, and the food. Being a baker and a cook, it’s so exciting to make homemade soups to warm everyone up on a fall day. And I admit – almost ashamed to – that I revealed to my mother the other day that I was excited for Thanksgiving, even though it’s 2 months away, ha ha. I can’t explain why exactly I am excited for Thanksgiving so soon, but I just love getting together with family and seeing how everyone is doing and where they are at in their lives. I make a point to never lose touch with anyone, and to always let them know that I am thinking of them.

Last winter I seriously thought of cross-country skiing, but being on the small side, I had horrible visions of myself falling down and breaking my legs and ending up shorter than I am. But now that I know that your beloved father and husband had a passion for cross-country skiing, I will summon up the courage and give it a go. Due to the fact that they had to break my sternum for the transplant, contact sports are forever out of the question, so cross-country skiing will be a nice alternative I think.

As for other things I am passionate about: I love tea (especially black teas), baking, cooking, macaroni and cheese, cheese by itself, chocolate, apples, pancakes, bacon, frequenting farmers markets, running yellow lights, mauling my poor cat, marvelling at the blessings life has given me, being entirely too philosophical at times, making friends, laughing, being outdoors playing piano, and sweatpants. I love hot temperatures (this 35C/94F plus weather has been heaven!) thunderstorms, and prefer to have windows open instead of having air conditioning on. I love history in all its forms. I love home renovation shows and would love to live in an old stone house. I am excited to travel, and would love to visit the eastern provinces here in Canada. I feel especially drawn to Newfoundland. I have been to Nova Scotia and loved it to bits, but I feel like Newfoundland is calling me for some reason. I think the scenery and the incredible view of the ocean will be spectacular, and my friends and I have spoken of taking a train out there at some point. I hope it comes to fruition.

I am not an alcohol drinker by nature, but tomorrow I will try my first ever drink of scotch in honor of my amazing donor. I’ve been warned it packs a punch, so if I don’t end up flat on the floor from its impact, you will continue to receive letters from me and know that I fared ok in its aftermath.

-0-

Saturday, August 7, 2010
It has been one year since my transplant took place. At 7:20pm I was wheeled into the OR and my new life officially began. Today I celebrated with my family, and did my first ever shot of scotch with my parents in honor of my donor, your husband and father. I knew it would burn but no one ever thought to warn me that it tasted like leather. My dad then made a toast to your family and thanked you for the gift that you so selflessly gave to me one year ago. We acknowledged the pain and grief you must still be feeling, and I said a silent prayer that you find release from it.

I guess I have blabbed on for long enough and should end this letter. Again, I would love to hear back from you. I hope this letter can again offer you some comfort, and I hope that the sadness in your heart is giving way to hope. Not a day goes by when I don’t think of your wonderful family, and I give thanks and say a prayer for you every day that goes by.

With love and hugs and resonating breath,
Your (grateful) ‘third child’,

P.S. Enclosed in this letter is my favorite recipe to bake: Scottish Scones. A buttery scone full of cinnamon-y goodness, I hope you love this recipe as much as my family and I do! Perfect for a cold fall day and Christmas season – and yes, I realize it is far too early to be thinking of those things just yet!!

-0-

The preceding letters are but a few of the thousands I found on the Internet.  I hope they gave you some good ideas for writing yours.  And…remember you are not limited to one letter even if you don’t get a response there is no harm in writing, plus…it feels good to do it.

-0-

smaller stillBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just email me bob@baronson.org and ask for a copy of “Life, Pass it on.“  This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. 

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Too Old To Get H1N1 Vaccine

In journaling on November 19, 2009 at 8:36 PM

If you are over age 64 and you  want the H1N1 flu vaccine (swine flu) forget it!  Even if you meet the criteria set forth by the Centers for Disease Control (CDC) you will not be allowed to get the vaccine.   I know, today I was refused a shot.   This development has great significance for everyone over 64 and especially transplant patients with compromised immune systems. 

According to the CDC website (http://www.cdc.gov/h1n1flu/highrisk.htm) these are the criteria for getting an H1N1 shot:

1. People at High Risk for Developing Flu-Related Complications

2. People who have medical conditions including:

  • Asthma
  • Neurological and neurodevelopmental conditions [including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability (mental retardation), moderate to severe developmental delay, muscular dystrophy, or spinal cord injury].  
  • Chronic  lung disease   (such as chronic obstructive pulmonary disease  [COPD] and cystic fibrosis)
  • Heart disease (such as congenital heart disease, congestive heart failure and coronary artery disease)  
  • Blood disorders (such as sickle cell disease)
  • Endocrine disorders (such as diabetes mellitus)
  • Kidney disorders
  • Liver disorders
  • Metabolic disorders (such as inherited metabolic disorders and mitochondrial disorders)
  • Weakened immune system due to disease or medication (such as people with HIV or AIDS, or cancer, or those on chronic steroids) 

 

 

I fit into three of the criteria.  I have asthma, COPD (chronic obstructive pulmonary disease) I am over 65 and because of my heart transplant two years ago I have a suppressed immune system.  My transplant cardiologists strongly recommend that people like me should get the H1N1 shot yet when I showed up at the clinic today I was told by the nurse that I couldn’t have the shot because I was over 64.  I double and triple checked to see if that is true and it is.  The government doesn’t care if your health is at great risk from H1N1 if you are over 64.  What I infer from this regulation is that CDC has determined that people my age don’t have much time left anyway so lets not waste vaccine on them even if they meet other criteria.

 

I would immediately agree that children and pregnant women should get the vaccine ahead of all others.  That only seems fair and fairness is all I ask.  Never before in my life have I been told I was too old for something.  This smacks of governmental age discrimination.

If you agree that this situation is unfair and discriminatory let your congressional delegation know.  Call them, email them or stop them on the street.  CDC should not be allowed to say one thing in public and then introduce restrictions in private.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net/index.php  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts.   

Reflections on Recovering From a Heart Transplant

In journaling, Organ Donation, recovery on July 16, 2008 at 12:18 PM

 

On August 21, 2007, I received a new heart at the Mayo Clinic in Jacksonville, Florida.  I also received a new life, a new attitude and a new appreciation for my family and friends.

 

I’m not going to write about the difficulties I encountered but rather I will attempt to describe my enrichment by the process.  Here are some of my “awakenings” of the last eleven months.

 

  • A new appreciation for life and a new ability to “see” things I was oblivious to before my transplant.  Now I “see” nature and the life around us, I “see” children at play, puppies, and love.  Yes, you can “see” love but you have to look and comprehend.

 

  • I have found the real meaning of love and it is far deeper than words.  Love, is a look, a touch, a gesture a movement.  Love can be seen in people’s eyes, how they listen and the helpful actions they take.   Sometimes you can be aware of love even though the actions taken might be wrong.

 

  • The gift of life is the ultimate in giving.  While receiving the gift is relatively easy, making the decision to give is sometimes difficult, especially for families with dying loved ones who have healthy organs.  Yet thousands of people make that decision every year despite the enormous grief they are experiencing.  I hope my donor family knows how intensely grateful I am.  I hope they know that they not only saved my life, but also caused great happiness for me, my family and my friends.  Let us not forget the living donors.  Can there be a greater expression of love, concern and compassion than those who voluntarily give all or part of an organ?  I think not.

 

  • While I loved my family unconditionally before the transplant I love them more deeply now, than ever.  And – while it sounds selfish, I now understand the depth of their love for me and how what affects me has an equal effect on them.  Oh, how the phrase, “No man is an island …” applies.  We should all recognize that and we would be far better people.  My greatest blessing is my wife, Robin.  I simply cannot express my love for her.  I won the biggest lottery ever when I found her. 

 

  • My dear, dear friends.  An experience like the one I just had really lets you know who your friends are.  There are friendly acquaintances and there are true, loving friends.  While both are important to me, few of the people I know fall into the latter category.  One has been a friend since we were ten years old.  I finally know what the word means; I suspect he has always known. 

 

I have learned so much more than the five items listed here, but these are the personal lessons that stand out.  All in all, I have to believe I have come out of this experience as a better person and one whose “betterness” will continue to grow.  In many ways, I wish everyone could have a transplant, we might all be better for it.

 

Please read and comment on my World Wide Issues  blogs on http://blogsbybob.wordpress.com.   Also…visit my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

 

Zero to 60 in Eight Months, What a Ride!

In journaling on April 23, 2008 at 7:42 PM

 

Today I got the results of my latest heart biopsy from Lorraine my Mayo Clinic transplant coordinator.  It is eight months since my heart transplant and the news was great. 

 

First, she told me that for the second month in a row I showed ZERO rejection.  That means my body, at least for now, is not trying to reject my new heart. 

 

Then she told me there would be no medication changes.  Everything was stable and could remain as is.  Her third piece of news was that I no longer would have a heart biopsy every month; it would now be two months between biopsies.

 

But the best news was that I am 60 percent!  “So,” you ask, “Why would anyone get excited about being 60 percent?” If you are not a heart patient, you probably would not understand. Here is the story.

 

Prior to my transplant, and for twelve years I suffered from cardiomyopathy.  The heart muscle was failing.  It was taking in more blood than it was ejecting, and had to grow larger to accommodate the extra blood.  As the heart enlarged, it got weaker and so on and so on. When the heart gets weaker so does the body.  Finally, I was in the end-stages of the disease.  The effect was that I could no longer walk 100 feet or more without stopping to rest.  

 

Here is the definition of ejection fraction (EF) according to the Mayo Clinic website: (http://www.mayoclinic.com/health/ejection-fraction/AN00360)

During each heartbeat cycle, the heart contracts and relaxes. When your heart contracts, it ejects blood from the two pumping chambers (ventricles). When your heart relaxes, the ventricles refill with blood. No matter how forceful the contraction, it doesn’t empty all of the blood out of a ventricle. The term “ejection fraction” (EF) refers to the percentage of blood that’s pumped out of a filled ventricle with each heartbeat. This measures the capacity at which your heart is pumping.  A normal LV ejection fraction is 55 percent to 70 percent.”

 

I am extremely happy with 60% because only 8 months ago my EF was between 15 and 20.  For all practical purposes, I was an invalid.  Now, my heart is as efficient as it was thirty years ago. I think I’ll celebrate, want to join me?   

 

Thank you donor and family, Robin my caregiver and the brilliant people at Mayo Jacksonville.

 

 

To My Donor Family

In To My Donor Family on April 8, 2008 at 7:04 PM

It is national donate life month.  Seven months ago, I had a heart transplant.  On April 13, 2008 I sent this letter along with one from my wife, Robin.   I hope sharing this letter will not only increase organ donation but will offer some comfort to other donor families.   

Dear Donor Family:

On August 21, 2007 I received a heart from your loved one.  You, he and it saved my life.  I promise I will take care of this gift far better than I took care of my own natural organ.  Each day before I get up I take a moment to feel this marvelous gift steadily thumping in my chest.  It is alive and healthy and has created in me a new appreciation for life.

More than that, though, I am always aware that this heart is not mine.  It belongs to the kind of person all of us should aspire to be.  Moreover, he came from the kind of people all of us should aspire to be.  Maybe it is my imagination but since receiving my new heart, I feel a serenity I have never before felt.  I feel a concern for others far greater than I thought possible. I feel a responsibility to all organ donors and their families to do what I can to honor their loved ones by committing the rest of my life to promoting organ donation.

I was very sick prior to my transplant.  I could no longer get around very well because my heart just could not pump efficiently enough.  I knew I was dying and as a 68 year-old man with COPD and B positive blood, I did not think a transplant was in the cards.  But it was.  As a result, I believe that God saved me for a reason and that reason was to promote organ donation to honor you and your loved one.

I appreciate the simple things now, much more than before.  I look forward every morning to seeing my loving wife and caregiver, Robin.  Staying in contact with family and friends has become more important than ever before.  I enjoy sitting in our sunroom watching the sunrise and sunset.  Each day gives me a new thrill because each day is a gift from you and from God.

I don’t know if we will ever meet and although I am likely to be at a loss for words, I would like to thank you personally.  You gave me life, you gave me peace and you gave me a profound sense of gratitude and understanding.  I am a new person and I hope that in your grief it helps to know that a part of your loved one is alive and that with his help I am trying to live my life in a way that would make you proud.

God bless

Bob Aronson

 

Walk Backwards — Forge Ahead

In journaling on December 3, 2007 at 11:52 AM

<I grew up in the 40’s and 50’s in Chisholm, Minnesota, a small town about 90 miles south of the Canadian border. Winters were cold, windy and snowy. Cars did not start unless you took the battery in the house every night and even that was no assurance of success. Getting a ride to school was unheard of because like most families we had one car and if it started dad took it to work, so – we walked everywhere (about a mile to school, uphill both ways ).

We learned early that when a blizzard was really howling you pulled up your hood, covered your face, put your head down and pushed forward. Sometimes, when extreme winds left us breathless, we would turn around and walk backwards. They did not cancel school in those days and there was no reward in going home, so we just kept moving. Not much could stop us from getting to where we needed to go.
My reminder of this great life lesson came on November 21 this year. Three months post heart transplant and feeling great, I was walking on the treadmill for an hour a day, doing all the grocery shopping, some light housekeeping and even considering resuming my career. Then, ”Bang,” I was hit with one of those breathtaking blizzard winds, I got pneumonia and was hospitalized the night before Thanksgiving 2008.
I had been told several times that because the anti-rejection drugs left me with a suppressed immune system, contracting a “bug” was very likely, but I thought, “I’m doing well, it won’t happen to me.” Well, the something that couldn’t happen, did and my energy level was affected immediately.
If you have ever seen snow blowing off the roof of a house, then you know how I felt. All my newfound energy was slowly but steadily drifting away. When I left the hospital after five days, I was almost as weak as I was after my transplant. I don’t know where I would have been if not for my previous three months of cardiac rehab; at least I had some strength to lose.
In the face of this storm, I knew that if I gave in to it, I would jeopardize my new heart. Medicine and technology by themselves cannot make for successful transplants; exercise is a crucial element and must continue regardless of the obstacles.
My earlier life experience with snowstorms became relevant again, “Walk backwards if necessary but keep forging ahead.” I’m doing that. Now a couple of weeks after being released from the hospital my breathing is much better and while I’m still recovering from pneumonia I know that turning back is simply not an option.
I’m not perfect and yes, I get discouraged, but thanks to the medical and rehab professionals, my wonderful caregiver wife Robin and my own optimistic attitude I will make it through this storm even if I have to walk backwards to do it.
The lesson for transplant patients is that you will have setbacks but they should be temporary and maybe even motivational. We can’t afford to lose site of the fact that new organs saved our lives. Now, we have an obligation to take care of them. To do anything else is not only self-defeating and deadly, it is an insult to the wonderful donors and their families who gave us a second chance.
You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Please view our new video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
Also…there is more information on this blog site about other donation/transtation issues. When you leave this site go to our Facebook group, Organ Transplant Initiative and join. The more members we get the greater our clout with decision makers.

“I may have a new heart for you”

In journaling on November 4, 2007 at 7:08 AM

Bob Aronson

Dr.Hosenpud’s call to my cell phone from the Mayo Clinic in Jacksonville, Florida was totally unexpected.  I had only been on the waiting list for thirteen days.   I knew that many people waited a long time for an organ; some even died waiting so when Hosenpud’s call came I was shocked to the point of being dumbfounded.  

“Don’t eat anything,” he said, “drink only sips, pack a bag and come to the hospital as soon as possible.”  He noted that while the match between the donor and me seemed good, there could always be circumstances that might prevent a transplant. It could be a false alarm.  I know I said something to him like, “OK, I’ll be there.” I can’t remember anything else.  I am usually very logical and decisive but at this moment emotions ruled. “This can’t be happening, I’m not ready, this is too quick, do I really need a transplant?” All of these questions despite the fact that I had undergone extensive transplant evaluation and testing at Mayo for several months.

“I’m here for a heart transplant,” I told the receptionist at the hospital, thinking they would rush me somewhere.  They didn’t.  The organ, if appropriate for transplant, had not yet been recovered so there was no immediacy, no hurry. As I signed the appropriate papers and Robin and I called family and friends, my mind was rushing, I felt confused, conflicted and apprehensive. Like a stressful dream, images, thoughts and snippets of conversation raced through my mind.  None lingered, they just flashed by.  Strangely, I was never frightened. I knew that if I had a transplant I’d be fine. That, I assume, is the result of my lifelong eternal optimism.  I am incapable of negative thinking. 

In my conflicted mind the pace of events increased to many times that of the speed of light, far too fast for me to follow, I have to depend on Robin’s memory and the recollection of others to help me with the details of what happened next.  All I remember through that incredible deluge of thoughts and images is waking up in the Intensive Care Unit and wondering what happened.  “Was the transplant over, am I OK, where’s Robin, what’s going on.”  I fell asleep again almost immediately. 

When I awakened the nurse told me I had a new heart that was working perfectly and that I was doing very well.   Robin, holding my hand, reassured me that everything was fine and that I looked good.  The monitors seemed to be happily beeping and chirping in tune with my new heart.  There didn’t seem to be any reason for me to be concerned so again I fell into the waiting arms of Morpheus.  Nine days later I left the hospital totally amazed and full of hope. 

Someone else’s heart is beating in my chest

In journaling on November 3, 2007 at 3:34 PM

What a realization!  I can hear it, I can feel it, I can feel it’s effects but it doesn’t belong to me.  My old, damaged, terribly inefficient heart is gone and a stranger’s much stronger heart beats in its place.  Saying it doesn’t belong to me is important because it reminds me that I must take very good care of it.  With this gift comes great responsibility and I enthusiastically accept it.

So what’s the difference in my life?  I had Cardiomyopathy (a form of heart failure) for 12 years prior to my transplant.  The last two years were miserable.  There were times when I was so short of breath and found it so difficult to move that in a brief walk from the family room to the bathroom I often had to stop and rest.  Now with my new heart I am doing things I haven’t been able to do in a decade.  Already I am walkiing an hour a day on the treadmill, doing all the grocery shopping, working on my hobbies spending time with my family and feeling great.  I am up every morning around 5 ready to meet the day and excited about the prospects 

Each day, though, I think of the selfless decision made by my donor and his family, a decision that allows me to live and to help spread the word about the importance of donation.  I cannot imagine the grief the family is experiencing and I can only hope that they find some comfort in knowing that someone is living and contributing to the lives of others because of their and their loved one’s generosity.   

Recovering from a heart transplant is not easy, especially when you were not in good shape to begin with.  But it is a whole lot easier when you have the right attitude, the support of family and friends and the knowledge that a total stranger made a decision that allows you to live.  I have a new appreciation for life and love every day this new heart allows me to spend with my family and friends.  If you are not an organ donor please ask yourself why?  You can help save or positively affect the lives of at least 60 people.  Isn’t that worth it?  Knowing that a part of you will live on in someone or maybe several someones  should be a great motivating factor.  Recycle yourself.

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