common myth out there that we are all guilty of uttering at one time or another, 'You only live once.' That is a well-intentioned statement, but it is

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Arthur Blair
6 years ago
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1 Early on the morning of June 22 nd, I answered the phone call that no one ever wants to receive, a call that would change my life forever. It was 4:34 AM Eastern Time. I will never forget the exact time. My sister in law, Tracy, called to tell me my brother, AJ, fell down the hardwood stairs at their Florida vacation home in the middle of the night and is currently unconscious with rapidly increasing brain pressure. He was in the trauma unit at Bay Medical Hospital in Panama City, Florida. Sadly, AJ lost his fight for life less than 24 hours later, but this is where the real story begins. AJ would die the same way he lived, by loving and by giving. As a natural extension of his generous spirit, he was already registered as an organ donor in Virginia. Because of his unselfish choice, five people were immediately given a new life from his organs, with the opportunity for sight provided to two others from his corneas and, potentially, up to 50 other patients lives will be enhanced from tissue grafts created from his bones, ligaments, skin, and veins. When Cameron Curtis asked me to speak at this event, I jumped at the opportunity to tell my story. I cannot think of a better way to honor AJ by taking this painful experience and using it for something good: increasing awareness on the importance of organ donation and hopefully increasing the number of registered donors too! I am not an expert on organ donation or transplantation. I am speaking based on my personal experience and the research I've done with the assistance of LifeQuest Organ Recovery Services which is the organization that guided us through AJ's donation process. There is a unique story behind each family's decision to donate. I learned donor families often speak about their loved ones' generosity, character, and willingness to help others. Donation is a way for families to allow those who died to make one final act of kindness, the ultimate act of humanitarianism by saving others, and maybe help ease their pain too. I never would have dreamed that one day I would identify myself as a Donor Family member. I am honored to share my unique and personal story along with what I have learned about organ donation, which has become one of my new passions. My story provides an intimate glimpse into our lives during extraordinary circumstances showing how life can continue and even grow from death. Before I get into the details of June 22 nd, I want to talk a little bit about my brother and my best friend who I miss every day. Many of you worked with AJ over the years in some capacity, or, knew him through Tracy so I don't have to tell you what a great guy he was, but I am going to do it anyway. There is a 1

2 common myth out there that we are all guilty of uttering at one time or another, 'You only live once.' That is a well-intentioned statement, but it is a lie. The simple fact is, you only die once. You live every day. AJ did this. He lived every day to the fullest as though it were his last. The prayer card Tracy selected for AJ's funeral is called The Dash, which is a poem written by Linda Ellis. It could not have been more appropriate for AJ. The basic message is that lives are not measured by the numbers depicting when a person was born and died, rather, a person is ultimately measured by how they lived, how they made people feel, how they touched people, and that everyone of those precious days count. AJ was a humble person who loved people. If there were a way for him to help others, he would simply do it. AJ was compassionate, but his extraordinary gift was making you feel special every time you spoke to him. And he was teaching his two young sons all of this, and why it was important to be humble and to be kind. That was my brother. That was AJ. Before AJ's death, our family was not very familiar with organ and tissue donation. In fact, AJ and I only ever discussed organ donation once that I can recall. Close to 5 years ago, a high school classmate of his and a good friend of ours, Jim Grande, was diagnosed with heart failure and was in need of a transplant to survive. While we were talking about the situation, AJ asked if I was an organ donor. I told him, 'Yes, ever since I passed my drivers license test at 16 but I never thought about what it really meant until now.' AJ simply replied, Yeah, me too,' adding, 'I think it is important if something bad should happen to one of us and we are able to donate our organs, that we do it.' I agreed with him. It is strange to me the things you recall during emotional moments in your life. Honestly, I probably forgot about that brief conversation as quickly as he said 'Yeah, me too,' but it came back to me when I was in Florida. I firmly believe AJ would have been happy to know he would help many others through his extraordinary gifts. He was very caring, and always wanted to help everyone just make things all right. No matter how prepared I thought I was for this tragic event, it didn't matter. Early on that June 22 nd morning, Tracy told me no one knew exactly what happened. Everyone was sleeping when close family friends vacationing with AJ and his family were awakened by two distinct thuds with the second one shaking the house. AJ was found unresponsive at the bottom of the stairs. They quickly went to him checking for a pulse and begging for him to keep fighting while simultaneously calling 911. The paramedics were at the beach house within minutes and almost immediately called for a helicopter medivac. They stabilized AJ as much as they could taking him for a short ride to meet the 2

3 awaiting medical transport. From there he was taken to Bay Medical Center in Panama City. The neurosurgeon, Dr. Franck, and the trauma surgeon, Dr. Hysong, decided on emergency brain surgery to find the source of the pressure and alleviate it. Before hanging up with Tracy I told her I would be there as soon as I could, to stay strong for AJ and the boys, and that no matter what happens, we will get through this together. I took a deep breath before calling my oldest sister, Deb, to inform her what happened. She said she would get dressed and go to my parents house to tell them and to be with them. Then I got in touch with my sister, Karen. In the 10 minutes it took me to call my family, my wife, Jodi, booked me on the 745 AM flight to Panama City. Between flight time, driving, and the time zone change, that would put me at the hospital around 1 PM Central Time. I left for National Airport 20 minutes later knowing AJ was about to have emergency brain surgery. Shortly after boarding my flight and putting my phone into airplane mode, Tracy called Jodi. AJ made it through the operation; however, we learned that during his fall he fractured his skull, which lacerated a vein in his brain. There was nothing the surgeons could do to stop the bleeding and relieve the continually increasing pressure inside his skull. Jodi contacted my sisters and then booked a flight for herself. When I landed in Atlanta I could not get my phone out of airplane mode fast enough. As soon as I had a signal I called Jodi. She answered merely telling me to call my sister, Deb, and that she had to go because she boarded a flight too. I immediately started crying because I knew at that moment AJ was dying and there was nothing I could do about it. I arrived in Florida driving straight to the hospital. Tracy met me at the entrance. We hugged each other tightly with her telling me it was not good. On the way to the ICU she told me what she could, prepping me for what I was about to see. When we arrived at AJ's room I was given some time alone with him. My first inclination was to hold his hand tightly, sort of rubbing it as I talked to him in an attempt to transfer some of my strength to him, willing him to keep fighting. I thought, Come on Bro, you have to pull through. You have so much to live for and to teach your boys. I wondered how could things have gone so wrong so quickly. 3

4 Several minutes passed, then Tracy and some of the staff came into the room to fill me in on everything. After the staff explained exactly what happened and where we were at, I quickly felt that praying for a miracle would not help and inside I briefly lost all hope. They said AJ's injury was severe and they could not touch that area of the brain or it would simply disintegrate. By now it was after 3 PM Central Time. Based on his vital signs, they only expected AJ to live a mere hours before being declared brain dead. The brain swelling was just too severe and was not slowing down. I was instantly choked up with tears welling in my eyes, and a hard lump forming in my throat when I suddenly remembered my conversation with AJ, from 5 years earlier, about our friend Jim. I realized AJ, himself, was to be the miracle I so desperately wanted. That lump and tightness in my neck went away as did the tears. I looked at Tracy asking her if anyone had spoken to her about organ donation yet. She said no and started sobbing. We hugged, and after a split second she said to me that is exactly what AJ would want as we held each other at the foot of his bed. After a few moments, Dr. Franck gave me a hug and before letting go, he said it was a brave decision adding my brother is a healthy and strong young man. He will help countless people. As he let go of me, Dr. Franck said he would contact the organ recovery team letting them know about our decision. We rescinded the Do Not Resuscitate order and we sat there alone, silent, on each side of AJ s bed. I felt like we just took what little control we had of the situation, and, by choosing organ donation, we allowed something positive to come out of absolute tragedy. I look at it this way: there could have been more than one heartbreak but we decided to turn our tragedy into countless blessings for others. We choose life. Becoming a donor family member was actually partially a very selfish decision. It kept my brother alive through others continuing his life. It has been a large part of my salvation as I recover from this tragic event. AJ lives on and I am extremely proud to have helped make that possible. To the best of my knowledge I was the first person to mention transplantation, even before anyone on the medical staff. I have since learned that one popular misconception with organ donation is the quality of care will change if you are identified as an organ donor. Organ and tissue recovery only takes place after all efforts to save your life have been exhausted and brain death is certain. AJ was provided outstanding care with every available option exhausted before anyone in the hospital considered organ donation. 4

5 At this point, I called all of my family and several of AJ's close friends so they could either personally say or relay their last messages to him through me. Tracy and I did this for the next several hours and well into the night letting AJ know how much he was loved and that a lot of people were thinking about him and praying for him and our families. Early in the evening we met Christina Clavijo for the first time. She was the clinical coordinator from LifeQuest Organ Recovery Services that we would be working with through AJ's donation. Christina and others like her work with people during the worst moments of their lives. She was kind, compassionate, and very considerate of what we wanted. She is exactly the type of person you would want to work with if something like this should ever happen to you. Christina provided an overview of the entire process and the rough timeline. She made us comfortable, answering any questions we had. A few hours later, Tracy went to see her boys making sure they were okay while I stayed with AJ so he was not alone. When the nurses changed shifts, they inquired if I had any questions. I asked what to expect since earlier in the day AJ was only given hours to live. I was told AJ would ultimately die of brain herniation. It occurs when pressure inside the skull moves the tissues cutting off blood flow to the brain. This typically results from swelling due to a head injury like AJ suffered. This occurred very early in the morning on Monday, June 23 rd. AJ s body was now being kept alive by mechanical ventilation and medications keeping his heart beating, his body stabilized, and blood flowing to his organs. Brain death can be confusing at times. My head knew AJ had died - I saw it happen. I witnessed the well-trained staff work to revive him and stabilize him so his organs could be donated. But, my heart still saw his chest rise and fall with each mechanical breath and somehow believed there was still a chance the outcome would be different. The hospital staff continued to carefully monitor AJ s vital signs keeping him stable while we waited for him to officially be declared brain dead and formally start the donation process. Adequate heart rate, blood pressure, respiration and urine output are critical to maintaining the viability of the organs. Two independent physicians, typically neurologists, each must run through a series of clinical tests designed to ensure there is no blood flowing to the brain, there are no brain stem reflexes, and that the body is not taking in any oxygen. These tests 5

6 occurred at 9:30 and again at 11 in the morning. AJ was declared dead at 1130AM on Monday, June 23 rd. A few hours later Christina privately went through the donation process with us again to see if we had any new questions. AJ was already registered as an organ donor in Virginia, which is an irrevocable contract for his organs. As for his tissues, we could have denied those but opted not to do that in order to help as many people as we could. We donated all of his organs: heart, lungs, kidneys, liver, pancreas and intestines. We donated his bones, skin, ligaments, tendons, veins, eyes and corneas. The organs would be transplanted anywhere from almost immediately to 72 hours later. Tissue has a longer timeline taking anywhere from weeks to months to ensure it is safe for transplantation. We also agreed that the organ gifts might benefit others through medical research if for some reason they cannot be used for transplantation. Organ and tissue donation is a very careful surgical procedure and we were assured that AJ s appearance would not be affected. We would be able to have an open-casket funeral. That was important to our family. The donation process itself is not complicated. The organ procurement team took over once AJ was declared brain dead and it is at this point that the recipients pay for all costs incurred. All of AJ s medical information was obtained, from past records and new tests, and then shared with transplant centers. The transplant surgeons used this information when reviewing their patient lists by organ type to see who was a potential match to criteria such as blood type and body size. They worked hard to ensure all of his organs all allocated to the proper recipients. Each organ was allocated based on different criteria; however, the list was sorted by the recipient s medical urgency, degree of match to AJ, and the time spent on the waiting list. We asked where his organs would go geographically and Christina said most of them are given to local patients. A few might be shared with patients in other regions of the country. This is fairly typical. Once the recipients were identified, the transplant coordinator arranged the arrival and departure times of the surgical recovery transplant teams. The procurement team is usually comprised of multiple surgeons, nurses, clinicians, and an organ preservationist. AJ s organ recovery surgery was scheduled for early Wednesday morning, June 24 th at 2AM. The surgical team flew in and some of the recipients arrived at the hospital. We never met them or saw them. I must admit, it was a strange, yet oddly calming and comforting thought that as we grieved for our loss, other families were overjoyed to hear the news their loved ones would be saved. 6

7 Christina asked me how LifeQuest could honor AJ before the organ recovery surgery. She offered they could play a song, recite something, or basically do just about anything legal within their power. AJ went into surgery with a black and white photo of his family in his hand, the same one many of you have seen on the education trust fund site. The song, I m Gonna Be (Walk 500 Miles) by the Proclaimers, played in the operating room as he entered it while everyone sang and danced. After that, our prayer to AJ that I wrote with the help of Tracy, her brother Tom and Jodi, was read aloud to him. Finally, everyone in the O.R. gave AJ one final buzz, a family gesture AJ was fond of doing. AJ was treated with respect and dignity the entire time. The next morning Christina notified us how the procedures went. The death certificate says Andrew T. Janosko's life ended on June 23 rd, 2014, but in fact, his body still lives. His heart, kidneys, lungs, and liver were successfully donated to five individuals days after his fall. We recently learned a little more about the recipients of AJ's gifts: The liver recipient is a 39-year-old woman from the Southeast. She has been married for 19 years and has one child. She was an administrative assistant before becoming too ill to work. Reading and cooking are her favorite hobbies. She is recovering well. A 26-year-old woman from the Southeast received one kidney. She has been a part-time student and now, with renewed health and strength, hopes to pursue a college degree. She is doing well, and has been released from the hospital. The other kidney was transplanted into a 62-year-old woman who is also from the Southeast. She is divorced, has three adult children and five brothers and sisters. Church work keeps her active and she has created a large circle of supportive friends. She continues to do well and is at home now. Both lungs were transplanted into a 19-year-old man from the Southeast. He has never been able to attend school or work due to his illness, but now he hopes to attend college after his recovery. He loves spending time with his family. The recipient of the heart is a 55-year-old man from the Southeast who has been married for 32 years and has one adult son. He enjoys photography, sailing, kayaking, and attending art festivals. He is still in the hospital, and is recovering well. The single thing that has helped my heart to heal more than anything else is 7

8 knowing what AJ's gifts have done for the recipients. Even though I don't know any of them beyond what I just shared with you, just thinking about them brings a smile to my face. No beneficiary of AJ's gifts has to say thank you to me, they just have to live & live well filling their Dash the way AJ had: by being selfless and living each precious day to the fullest. That is what AJ taught us. That is all I ask of them. I hope I will eventually see AJ s eyes in some passenger on a plane, or in a parent playing with their child at the beach. I might walk by and wonder if it s AJ s eyes that taught them giving is far better than receiving. Our family finds solace in knowing the man who constantly wanted to brighten others' lives continues to do so today. AJ not only saved the lives of the five organ recipients, his example has already inspired others to choose to become registered organ donors. We will never truly know how many people s lives will be saved because of this tragic event. I plan to continue to support the cause of raising awareness for organ and tissue donation by taking time to share my story about my brother, and my family s experience, and hopefully I will be able to support other families in their time of sorrow. Before I conclude today, I want to thank Cameron Curtis for the idea and invitation to speak at this event. Thank you Cameron. I also want to extend a special thanks to the AMPs Board of Directors for accepting Cameron s idea and formally asking me to be here today. Thank you very much to the Board for the opportunity to tell my story. Finally, I want to thank all of you listening and for considering becoming an organ donor and giving the gift of life. There is nothing greater. Thank you. 8

the little boy 1 a good boy 1 then you give 1 is about me 1 was to come 1 old and new 1 that old man 1 what we know 1 not up here 1 in and out 1

the little boy 1 a good boy 1 is about me 1 then you give 1 was to come 1 old and new 1 what we know 1 that old man 1 in and out 1 not up here 1 good for you 1 down at work 1 with his cat 1 it was new