When I stand before God at the end of my life, I hope I have given away my talents, my love and my organs and can say, “God I used everything you gave me to benefit others. Anonymous
By Bob Aronson
The time had come. Claire Connelly was finally going to meet the man who had her son Paul’s heart. She would travel from southern to northern California by train to meet him. This trip was more than just an opportunity to meet the man, it was the culmination of a three-year long search. Claire was determined to let nothing get in the way of this meeting. She was so afraid that she might oversleep and miss her train, she drove to the Amtrak station the evening before and slept in her van in the parking lot. Meeting her son’s’ heart recipient had become Claire’s sole purpose in life, so when she boarded that train last Monday morning her heart was in her throat.
The recipient’s name is Ken, he cherishes his privacy and we agreed to identify him only by that name. He is retired and lives with his wife in a northern California city. Claire was not only invited to meet Ken and his wife, but also to stay in their home for a few days so they could get to know each other
Before we go any further, let me take a moment to remind you who Claire Connelly is. I wrote about her in a blog on October 21, 2016. To meet her, even by phone is to love her. She is kind, upbeat, considerate and passionate about life and living. Claire is your favorite aunt — you know, the one who is funny, always has a gift for you and really listens to what you have to say. She’s one of those people who brings energy and love of life into any conversation. When you talk; with Claire you can’t help but feel good.
Claire has suffered unimaginable pain in her life. She had three children, two boys and a girl. Now, only the daughter remains. Her son Pete died of cancer at the age of 46 in 2008, and 49-year-old Paul’s life was taken by a stroke in 2013. Losing two sons within five years is tragic enough, but Claire’s pain was compounded because they died on the same date — October 13. “What are the odds,” she asks. “What are the odds that you would lose two sons within five years of one another and on the same date on the calendar?”
When she was called to the hospital in 2013 Paul was on life support. His driver’s license indicated that he was an organ donor, so when asked if she wanted to donate his organs, Claire Agreed immediately. She does not know who got his other organs, but she’s satisfied to know that Ken got his heart.
I could feebly try to describe her feelings about meeting Ken, but that would be wrong. Her own words provide drama and emotion that I could not begin to write. When she got on the train on December 12, she carried with her some gifts for her son’s heart recipient along with a stethoscope so she could listen to his heart. As soon as she boarded, she sent me a text, “On the train. On way to meet Ken,” she said. Her writing describes the stream of random thoughts that somehow merged like two sets of railroad tracks. Claire kept a journal as the train sped north. If you close your eyes you can almost hear the clacking of the wheels on the track and the whistle being blown as intersections are crossed.
The words that follow are Claire’s from her journal. When you read them you will have the rare privilege of being able to listen in on a mom’s thoughts as she anticipates hearing her son’s beating heart for the first time in three years.
“Getting to meet Ken is the very best Christmas present I could have ever received, but let me make one thing very clear, this is not my story or Ken’s. My son Paul is the hero here. Long ago he made the decision to become an organ donor. All I did was to ensure that his wishes were fulfilled.
Ken and I have been speaking by phone since August 12 and now I’m actually on the train going to meet him and his wife. He is alive today because my wonderful son Paul made the
courageous decision to become an organ donor.
Ken has expressed his gratitude many times, but more than that he lives his gratitude. This kind gentleman will not drink alcohol or coffee because he has “too much respect” for Paul’s heart! Oh lord, my soul can finally rest knowing that Paul’s heart has found the best possible safe harbor. To know that I gave birth to the heart that is beating within this man’s chest and that he is sharing my own DNA as he sits across from me or goes about his day is something I can barely get my head around!
Recently I found a photo of a Paul when he was just four years old. He was holding his
fishing pole, Oh how he loved fishing and wouldn’t you know it, Ken loves fishing, too! I had that picture framed to give to Ken because that sport is his passion and I wanted him to know he had the heart of a fisherman. Strange but there were some other links I discovered, too. For example, they both drove the same model of pickup truck and both smoked the same type of Cigarillos.
Because of our telephone, text and email contact, I now have a bond with this remarkable man that is as close as any other I have and it warms my heart to know that he is in this world. What might appear to some as a quick four-day trip would be to miss the point. I’ve been on this journey for three long years, a journey that would reunite me with the essence of Paul. The anticipation of leaving the melancholy life i have known for the past three years and approaching a new fulfilling relationship with my new “son” kept me on the verge of tears until our initial embrace.”
When the train arrived and squeaked and squealed to a slow stop. Claire got up from her seat and headed for the door. Ken and Jan were there waiting for her. The meeting was almost wordless, yet spoke reams. Again, Claire’s words.
“Immediately when I got off the train there were lots of long hugs. It seems as though none of us wanted to let go, but eventually, we got in the car, had a lovely dinner and talked and hugged again till late in the evening.
The following day, we spent in our jammies, just hanging out at the house, everyone comfortable with each other. That’s when I brought out the mementos. A coffee mug that said, “I had a change of heart,” Paul’s fishing picture, Paul’s key ring, a special pencil that was engraved with Paul’s name and some other things that I either made or purchased. Ken loved all of them, he even has a collection of keys.
Still in our jammies, we continued to talk as we set up and decorated the Christmas tree. We
had so much fun doing it, it was so meaningful we committed to making it a tradition and doing it every year.
Finally, I hollered into the living room, “Ken, bring that heart in here, I want to listen to it.” I had my stethoscope in my hand.
He stood in front of me and with the earpieces in, I touched the chest piece to where I thought his heart was but heard nothing. I kept trying but couldn’t seem to find it and
It was then that Ken took my hand and the stethoscope chest piece and placed it on his heart. Then — then I heard the soft, steady, rhythm, “Thump thump – thump
I was listening to my son’s heart again. My eyes filled with tears and I got a lump in my throat, I couldn’t stop listening. Paul’s heart was keeping this lovely man alive. I thought to myself, I can now rest. The long wait is over and I no longer have to wonder. I am at long last at peace with the world. I finally heard Paul’s heart. A part of my son was alive and well.
Ken told me that just before the transplant, the Surgeon asked him if he wanted to see the heart. When he looked, it started to beat and the doctor said, “This heart wants to live,” and the procedure was started. Ken said he was told that his transplant only took seven hours, a much shorter time than usual. He was also told it was the smoothest, least complicated transplant the Doctor had done.”
Hearts are amazing organs. A man’s heart, for example, beats 70 times a minute. A woman’s heart is a little faster. The thumping sound you hear is really the sound of the four valves opening and closing in a process that pumps a million barrels of blood in an average lifetime. To do so it will beat 2.5 billion times. To put it in perspective, If you were to turn on your kitchen faucet all the way and let it run for 45 years, that would be equivalent to the amount of blood a heart pumps in a lifetime. That’s pretty amazing.
All good things must end it is said, and so it was for this visit. After four days together Ken and Jan took Claire to the train station for the ride home. It was bittersweet. Bitter because she didn’t’ really want to leave, but sweet because she had so many wonderful memories to carry with her and sustain her. Claire finally had some kind of closure. Again, her words.
“When we got to the train, Ken boarded with me to make sure I was comfortable. He seemed very concerned about me and did everything he could to make sure I would have a pleasant trip back home. I sat there for a few minutes and then felt I just had to see him one more time, so I got up and went to the door and, and there he was, waving and saying, “Bye mom, bye.”
Now I’m home again with so many wonderful memories and with so many pictures to remind me of my journey and of my new son. I will go back, we will meet again. I don’t know where or when, but it will happen.”
When Claire spoke of meeting Ken and Jan again, I could almost hear that wonderful song playing in the background.
We’ll meet again
Don’t know where
Don’t know when
But I know
We’ll meet again
Some sunny day
Keep smilin’ through
Just like you
‘Til the blue skies drive
The dark clouds
Bob Aronson is a 2007 heart transplant recipient and the founder of this blog which contains nearly 300 posts on donation/transplantation and associated issues. If you need a support group, please join Facebook’s Organ Transplant Initiative. And if you are not yet an organ donor, sign up now, it takes almost none of your time and you can do it from where you are sitting. Log on to http://www.donatelife.net and make the commitment now. Then, tell your family your decision so there is no confusion when the time comes.
By Bob Aronson
This is a story about a remarkable woman, her family and her incredible spirit. It is a story that has no ending because it is still unfolding. It is a story that is guaranteed to make you
experience every possible emotion. It is the story of Claire Connelly of San Diego, California. A divorced mom of three — Sara, Pete and Paul Neves. Even her name has a story. When she was divorced she took her original name Connelly back because so many who held the name had died and she wanted to extend its life. That’s Claire, she is all about life and living.
My first contact with her was by email where she goes by the name “Pete’s mom RIP.” That alone tells you a little about her and about a son who is no longer with us. But that’s only a fraction of the full story, a story that is bound to make you smile, cry and then smile again. It was a difficult story to write because there is so much to tell and so little space in which to do it.
“The Agony and the Ecstasy” was a 1965 film about the great artist Michelangelo. That title came immediately to mind after speaking with Claire for the first time. She has gone through incredible agony and it lives on, but her actions have also allowed her and others some ecstasy, much of which is still to be experienced.
I’ve only had email, text and phone contact with Claire, but it is easy to see that she is a vibrant, fun, upbeat woman who loves life, but has suffered losses few could survive and maintain their sanity. Most importantly, Claire Connelly has given life in more ways than one. She is an absolutely remarkable woman who willingly shares her story so that others may benefit. Prior to our interview Claire warned me, “I’m a crier,” she said. After the interview my tears flowed with hers.
Pete was Claire’s middle child. She speaks of him with intense love and pride. He was a model child, neat, organized and truly gifted. When we talked
she described the young boy who would select what he wanted to wear to school before he went to bed at night. As he grew up he decided that his life’s goal was to become a U.S. Army Ranger.
The U.S. Army Rangers are a very tough outfit. Few who apply for Ranger
training make it through the program that’s been called the “toughest combat course in the United States.” Pete made it through with flying colors and got into Special Forces, but a back injury ended his career. Disappointed, but still wanting to stay in the Army Ranger Family and connect with other Rangers he returned home and started a U.S. Army Ranger website where he sold Ranger T-shirts, caps and other items.
When the second Iraq War started Pete signed up as a contract soldier, his Ranger instincts were still alive and he wanted to help, but despite his excellent physical condition he found himself weakening. He could no longer make long marches or sustain extended
periods of physical activity. Something was wrong. He returned to the U.S. and was diagnosed with fourth-stage Medullary thyroid cancer. Pete was treated at the M.D. Anderson cancer center, but without success and his condition slowly worsened. Claire, in tears when she talks about his hospitalization and upbeat attitude said, “The worst thing he could say was, “Mom, I’m not having a good day.” He never complained, he soldiered on. He was in the battle of and for his life, but the odds were just too great and Pete succumbed on October 13, 2008 at the age of 46 leaving a wife and daughter behind. Claire remembers Pete every minute of every day. Thoughout her home she has Pete memorabilia and each year on the anniversary of his death she finds a new way to honor him, like going to the beach and tossing something into the ocean for him.
Needless to say Pete’s passing was a devastating blow for Claire, but she’s a strong woman
and let her memories of Pete sustain her. Claire went on with her life, but never forgetting October 13. As the years passed she mourned, but enjoyed contact with her remaining children Paul and Sara. Then on an otherwise happy day, Claire got the phone call no parent ever wants to receive. “Come to Sacramento right away,” said a hospital nurse who explained that Paul had suffered a massive stroke. He was found on the sidewalk by his house unconscious. It was estimated he had been there for three hours or more before he was discovered and now a web of wires and tubing connected him to the technology that kept his heart beating and his lungs working. Claire remembers that phone conversation as though it took place an hour ago, “When I got the call that my other son, Paul, was on life support and could I please come up to Sacramento to sign the necessary papers for his organ donations, I put the phone down and let out screams I didn’t know I had inside of me.”
While he was rushed to the hospital there was nothing that could be done; the time between the stroke and his being found was just too long. Claire hurried to be near her son, her “Baby” as she called him.
When Claire arrived at the hospital she was told that Paul showed no brain activity. He was what is commonly known as “brain dead.” Shortly after she was approached by the Organ Procurement Organization and told that Paul’s driver’s license indicated he was an organ donor. Claire, also an organ donor, immediately agreed to honor Paul’s wishes. She was informed that he was in such good physical condition that all organs that were transplantable could be donated, but first they had to find recipients. That meant Paul would be kept on life support for several more days. Days in which Claire sat and stared at her immobilized son, tubes and wires still attached still breathing and warm to the touch of a mother’s hand.
Finally she was told that recipients had been found and it was time to take Paul off of life support. There cannot be a more terrifying moment for a parent, than to be called upon to end the life of an offspring. What pained her most is that they never got to say goodbye. “When Pete died,” she said, “it was terribly sad but we had a lot of time to talk and say goodbye. With Paul it was so sudden, “I never got to say goodbye,” she sobbed. But the worst part of the story is that Paul’s passing on October 13, 2013 was exactly five years to the day after Pete who died October 13, 2008.
Claire is still stunned by the fact that her two boys died exactly five years apart and she still grieves. Parents are not supposed to outlive their children, but there is a bright spot in this story and it is the lives saved by the donation of Paul’s heart, liver, lungs and kidneys.
For a while after Paul’s passing Claire waited to see if she would be contacted by recipients of Paul’s organs, but nothing came so Claire being Claire, decided to write to them. Her letters were passed on by the local Organ Procurement Organization (OPO). Here’s what she wrote.
October 16, 2013
Please know that your recent gift of an organ came from my son who died suddenly, leaving all of us bereft, were it not for his generosity in wanting to be an organ donor at the end of his life, which we all hoped would be many years down the road, at least well after mine. The last thing he wanted was to be hooked up to any machine, but that is exactly what happened. We feel that because that was necessary to keep his organs going to fulfill his wish of organ donation, he would have approved being monitored by banks of machines, and being poked and prodded endlessly for three days in order for that to happen.
He was a give-you-the-shirt-off-his-back kind of guy who loved the great outdoors, loved to fish, camp and ride his wave runner, and was thrilled at the sight of any wildlife, be it raccoon, elk, mountain lion or bear. He loved Yellowstone National Park best of all. He cherished life and we are comforted by the fact that parts of him will live on and our prayer is that you take good care of and appreciate what you have been given – a central piece of him – his ultimate gift. The fact that he was able to donate so many of his organs speaks to the fact that our family is blessed with good genes and we hope and pray that your new organ will serve you well, with every beat of his heart and every breath that you take, and that you think kindly of him from time to time. I can assure you that he, as well as you, are in our thoughts and prayers every day.
Perhaps one day we can share our thoughts in person, if you are willing. Our family is hoping for that possibility and look forward to the day when that can happen.
The mother of the donor.
Again she waited. Months went by and then one day, a letter arrived (edited to protect the identity of the recipient).
Dear Mother of the donor,
Your heartfelt letter was received at a perfect time of my life. Before I continue any further allow me express my sincere thank you to the mother and family of my heart donor. I would also like to thank the young man who is responsible for my being alive today.
It is because of you and of course your loving son that I am alive. Please know that each time I feel my heart beat I think of your son. It is amazing to me that your son (my donor) and I have so much in common. I was blessed with receiving a new heart. I will never take that for granted. Please be assured that I am taking very good care of myself and that I am getting emotionally and physically stronger and stronger as each day passes. I look forward to meeting with you one day and am overwhelmed with the thought of that meeting.
God bless you and I’m looking forward to talking with you soon.”
The recipient has asked that his identity not be revealed.
Claire is excited as well because the meeting date has been set for December 12, not long from now. While it is not unusual for donor families to go public with their stories, it is also not common, but Claire Connelly is not your average person. I asked her why sheagreed to an interview and to have me publish a blog. Here’s what she said.
“My purpose in telling my story, and I believe I am speaking not only for myself but for other donor families as well, is to convince even one organ recipient to take a moment out of their busy day to send a word of thanks to the donor family. If I can do that, then this effort would have been worthwhile.
For the organ recipients who feel they don’t want to remind the donor families of their loss, my wish is that they begin thinking of it in a new way. Most donor families are ALREADY still feeling that loss, and it might give them some comfort to know that their loved ones hearts are still beating, or their eyes are still taking in the wonders of this world, or their lungs are being appreciated with every breath you take.
From this donor mother’s perspective, perhaps they are wondering why the gift of life that their family member provided has not moved the recipient enough to say thank you and to let that donor family know that you appreciate the generosity it took for their loved one to sign that donor card to leave their organs in such a profound way to total strangers. They are left to wonder if you truly appreciate the generosity it took for that family to agree to a procedure with which they may not totally agree, and to go to the hospital every day to keep a vigil for the brain-dead body of their family member, while potential organ recipients are researched, measured, weighed, matched up, scrutinized and finally, all scheduled to be prepped for the exact same moment. While it was heart-wrenching to see my son for the last time as he was wheeled out of his room to the O.R. just down the hall for the recovery of his organs, it was so rewarding to hear directly from his heart recipient how much he appreciated the gift and to hear to what lengths he goes to protect it, to take care of it, to monitor it, to faithfully keep his checkup appointments, etc. I can only say it did this mother’s heart good to KNOW FOR SURE that Paul’s heart beats on, is appreciated, and cared for.
Paul’s heart recipient and I have agreed and are looking forward to meeting in person on December 12 when he can thank me in person and I can feel and hear Paul’s heart beating within his recipient’s chest. We have already shared photos and he calls me, “Mom.” I don’t want him to think of Paul as “some dead guy”, but as the generous fabulous person he was. Toward that end, there are things of Paul’s that I want to give to him, and things about Paul that I want to tell him. Nobody, except another donor family member, could even begin to imagine what this experience will be like. Will it be emotional? Certainly. Would I miss it for the world? Not a chance. The willingness of his heart recipient to contact me is what will make this possible. While it won’t bring Paul back, it will go a LONG LONG WAY to give me the peace of mind in knowing what a difference he has been able to make in this man’s life and that he appreciates it each and every day and that he is taking every measure and precaution with Paul’s heart. And THAT does this mother’s heart good
While I have not heard from the recipients of Paul’s two lungs, two kidneys, nor liver, I still wonder about them, but that is outweighed by knowing, at least, that his heart is still beating within this kind man’s chest and who cared enough to write a thank you letter.”
Claire Connelly is a unique person who told this story to help others. I know she’d like to hear your thoughts and you can send them to her through my email address firstname.lastname@example.org and I will pass them on.
And one more thing. If you are an organ donor, that’s great. If you aren’t, register at donatelife dot net and get your family and friends to do the same.
Dr. Seuss said it best, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
Thank you Claire and most of all, thank you Paul for your gifts of life.
*Note. Bob Aronson the author of this blog is a 2007 heart transplant recipient. He is the founder of Facebook’s Organ Transplant Initiative a donor/recipient/caregiver/donor family and friends support group of well over 4,000 members.
Check the index on this blog for other posts that may be of interest to you, there are nearly 300 of them on almost as many topics related to transplantation/donation issues.