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Youngest transplant recipient in the world, 6 years later.

It was six years ago in January that Caylyn and Chris, as well as the world, welcomed the small miracle of Oliver. Oliver is unique because if you take into account, he was seven weeks premature when listed for transplant and six weeks premature when receiving a heart transplant, it makes him the youngest person ever to receive a heart transplant.

Oliver has been fighting for his life even before his birth on Jan. 5.
On Caylyns 20 weeks well check during pregnancy, doctors noticed that something wasn’t right with Oliver’s heart. She was watched very closely in the weeks that followed. Her doctor’s advised Caylyn that the longer Oliver stayed in utero, the better his chances for survival. They were hoping to get her to 37 weeks. Even then, the prognosis was grim. Oliver’s defect was cardiomyopathy, which, to be noticed on an ultrasound, showed it was very severe. Caylyn was counseled to seek help from palliative care and make preliminary burial plans if the worst happened. She met with the Ryan House, an organization dedicated to helping families with end of life care for children. Caylyn had even bought the clothes she would bury him in.

At 33 weeks, Caylyn’s worst fears were coming to fruition when her water broke. She woke up terrified. Both she and her husband were afraid that she would lose Oliver because he was being born too soon. She immediately called her prenatal cardiologist and went to the hospital. Her medical team was already prepped and ready when she arrived, being a high-risk case. They tried furiously to help contractions stop. Caylyn labored for 72 hours and eventually gave birth despite their best efforts.

He was born naturally, even with the fear that his enlarged heart would be compressed and cause problems. Caylyn said the final birth process went so fast. He was so tiny and didn’t make a sound. She got to kiss his little head and then hand them off to her team. She says they were well-orchestrated and passed little Oliver down the line to connect him to IV’s and enteral nutrition through this tiny belly button. Caylyn’s mother followed Oliver to the NICU. When she arrived in the room, there was already a large team of doctors working on getting Oliver stabilized. His team filled the room for hours. Caylyn’s mother was patiently waiting outside, knowing they were doing everything that they could.

Meanwhile, Caylyn was discharging from the hospital as quickly as possible to be with Oliver. Her prenatal cardiologist, Dr. Lindblade, walks in as Caylyn and Chris are packing up their hospital bag. Caylyn was terrified it was awful news until she saw the smile on his face. He noted that Oliver was beautiful and was hanging in there. Caylyn fell on the bed with a sense of relief and a brief moment to catch her breath.

The next step was very carefully planning emergency evacuation from Banner Good Samaritan to Phoenix Children’s Hospital. The route had to be planned down to the detail as to avoid any major bumps or potholes that could dislodge a large clot found in his already enlarged heart.

By the time that Chris and Caylyn got to Oliver at PCH, it was morning. She had to get special permission to leave before the 24-hour observation window recommended for new mothers. They raced to the car and then to the hospital. By the time they reached the room, she had described the room as peaceful—the nursing staff at laid all of the cords out perfectly. The room was dark and quiet. She said that it was the first time she had peace and a moment to breathe in the past week. At this point it was a wait and see process.

Over the next few days, there were still many ups and downs, as would be expected with a baby surviving so much already. Medication and oxygen were at a maximum to help mitigate the worsening of his ejection fracture and condition overall. ECMO wasn’t even an option as they had never tried it on a baby so small. Plus, stroke was a real danger with the enlarged blood clot still in his heart.

When he was four days old, everyone knew that it would either be transplant or decline. He was listed on a Friday. Within 48 hours, they received the call. Before sending Oliver to the OR, the nurse asked Caylyn if she wanted to hold Oliver. With babies in cardiac distress, parents often aren’t allowed to hold their babies for days for fear that any small movement could kill them. This moment was different. She held her baby for the first time, not knowing if she would ever get to hold him again.

He was six days old when he underwent a heart transplant at Phoenix Children’s Hospital. The transplant team kept Chris and Caylyn informed with text messages through the night as they performed the surgery. They would get texts telling them of the first incision, Oliver on bypass, the heart has arrived, and finally, the heart is in and beating. Upon the final text, Chris and Caylyn were on their way and waiting to meet Oliver in the ICU post-op.

Upon entering the room, the doctors inform them that everything went as smoothly and perfectly as possible.

About a month after his surgery, the family was beginning to have real hope. They got to present at a special Valentine’s celebration meant to honor all the heart babies and the medical staff in the heart center at PCH. They finally got to have a baby shower for him.

Caylyn said she and Chris are forever grateful to Oliver’s doctors and nurses. “They never gave up hope, and we’re so grateful for that,” she said.

Today, over six years later, you would never know Oliver was such a miracle. He runs around the house with his three brothers and baby sister. Oliver is excited to play soccer once able to. He won a medal in the last Arizona Transplant Games. He loves school, even though it is virtual. His glasses and beautiful blond curly locks frame his radiant smile. He is happy and healthy.

Caylyn has made contact with Oliver’s donor mother through the Donor Network. The donor mother also had a host of complications during pregnancy due to a hyper-coiled umbilical cord. It wasn’t even a question of whether to donate when asked. She didn’t know it was possible at first but was glad that she could.

Before COVID hit, you could often find Caylyn’s warm and welcoming smile as a volunteer for Donor Network of Arizona. She has a deep calling to give back after the gift that Oliver received. Her advice to new parents just entering this journey is to trust the process; this transplant community is beautiful and welcoming. As scary as this all can be, the clinicians just want to see the babies survive and thrive. Things may seem out of control, but know there is a greater plan at work. Caylyn credits her faith, whether you pray or you meditate, just to make time for self-care. Because it’s a lot emotionally, a lot mentally, and then you’re going to learn a whole new world of possibilities.

Want to help Oliver? Donate:http://cota.donorpages.com/PatientOnlineDonation/COTAforOliverC/

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Robert Scanlan

Robert-Scanlan

Robert Scanlan is the grateful recipient of three organ transplants: a liver in 1998 and another liver plus a kidney in 2008. He is the author of the highly acclaimed true memoir Tigers Under My Bed: Life Lessons Tamed During Three Organ Transplants.

Prior to transplant, Robert founded with Nobel Laureate Dr. Milton Friedman the nations’ first non-bank to fund Small Business Administration loans. This innovation has become a multi-billion dollar industry. Robert later formed another lending company to personally fund over 200 small businesses.

While he managed investment portfolios for wealthy individuals, Robert’s liver failed without warning. He received a transplant in two weeks, and returned home six months later having lost everything. He spent years creating a new successful career, and a new personal life. Ten years later the new liver failed, and Robert received another liver and a kidney. He has received numerous accolades and awards from One Legacy in Los Angeles, from Donor Network of Arizona in Phoenix, and from United Blood Services in Phoenix.

Robert is a professional inspirational speaker. He has addressed thousands, often in participation with Donate Life, The American Kidney Association, The National Liver Foundation, United Blood Services, and Prime Care Hospice to deliver their message to the general public and professional groups. Currently he lectures to social worker classes in post graduate studies at the University of Southern California. His book is reference material for students at USC, and is used at UCLA’s Ronald Reagan Medical Center for education of patients and caregivers.

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Judy Maltz

judy-Maltz

Judy Maltz has been talking reimbursement since 1986 when she began her career in the home infusion therapy business…what she calls “the original specialty pharmacy”. After 10 years Judy left the provider environment to work for Healthcare Delivery Systems, a small but growing division of McKesson, which today is McKesson Specialty Solutions. Offering reimbursement consulting to manufacturers, conducting Provider Education, designing and managing Patient Assistance Programs and Reimbursement Hotlines across multiple therapeutic areas established Judy’s depth of knowledge in policy, coverage and reimbursement of pharmaceuticals.

As Reimbursement Program Manager for United BioSource Corporation (UBC), Judy fine-tuned her skills by developing payer advocacy strategies, providing payer coding and policy analysis, creating provider education modules and reimbursement programs for biotech and pharmaceutical companies including Sanofi Pasteur, Bayer, Novartis, and Gilead Sciences.

It was during these last 8 years at UBC when Judy worked as the reimbursement ambassador for Novartis Pharmaceuticals’ Transplant franchise that she found her true passion. In serving the transplant community, Judy always takes a patient-centric approach, working to resolve immediate reimbursement issues while continuing to clear the path to secure future medication coverage. This takes solid collaboration and consistent communication with patients, families, providers and payers. Her trademark is bringing insight and clarity to the most complex of payer issues through education, support, patience and perseverance.

Judy has presented at over 100 Transplant Centers across the country and is a speaker at transplant patient support groups.

Currently working as an Associate Director at Xcenda, LLC, a consulting company, Judy is also an active volunteer with her local chapters of the American Liver Foundation, the American Kidney Foundation and was appointed a board member of Transplant Community Alliance in 2016.

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Gregory Welsh

Greg-Welsh

Gregory Welsh, a 50 year old father of one daughter, has experienced the lifesaving benefits of donation first hand.  After a fatal car accident in 1996, Gregory made the decision to donate his wife’s eyes, tissues and organs.  Fifteen years later his generosity came full circle when on May 18, 2011, four months after suffering a heart attack that made him reliant on an artificial heart, Gregory received a heart transplant. He has since become an advocate and voice for donation.  He is currently employed by Gervasio, & Assoc., Inc, an engineering consulting firm. Past experiences include business ownership and technological expertise in the computer field. Besides working full time, organ donation awareness has become a full time passion. Gregory brings personal experiences and dedication to the mission of the New Life Board.

Greg-Welsh
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Dan Baran

Dan-Baran

Dan was born in Tucson, Arizona. His family believed in organ donation and Dan registered as an organ donor while a teenager with the approval of his parents. Little did Dan know that organ donation would directly affect his life in the future.

Dan completed his studies in the Phoenix area. He began his career in the aerospace industry with Sperry Flight Systems in 1981. While working there he met the love of his life Anna who was employed at Honeywell. Eventually Sperry merged with Honeywell, and Dan and Anna became life-mates as well.

In 2001 Anna became very sick. Changing doctors in search of answers, it was determined that Anna had liver failure caused by Hepatitis C. In November 2002 she received a liver transplant at Mayo Phoenix.

After recovery from her surgery with Dan at her side, Anna and Dan became involved in the transplant community with the idea of helping others. They volunteered time and effort with the Donor Network, the Liver Foundation, the Kidney Foundation and Transplant Team Arizona.  Anna participated in the Transplant Games of America. and eventually she and Dan immersed themselves in the Transplant Team program. Dan became a board member and then President of the Board.

In 2017 Dan was a leader in the merger of Transplant Team Arizona with the New Life Society, where he now adds strength as a board member.

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Andrew Bombeck

Kidney Recipient

Andrew Bombeck – Andy is a kidney recipient of 11 years after receiving a live donated kidney from his wife Shari on April 11, 2003. He is a retired elementary school teacher after 30 years and now spends his time writing, playing tennis, playing guitar, and promoting organ donation by working with the New Life Society’s Schools Program and volunteering with Donor Network of Arizona. He was on the board at the Arizona Kidney Foundation Board for 8 years and currently serves as a board member and has competed with Transplant Team Arizona in the Transplant Games since 2008. Andy lovingly admits he’s in a losing battle trying to keep up with his 8-year old son, Michael.

Will you describe what your life was like before Transplant?
Over the years prior to my kidney transplant in 2003, my energy level was slowly declining. I was teaching elementary school at the time.  Most teachers will agree that patience is the one thing that makes a good teacher.  Because my health was declining, the two years leading up to my transplant in 2003 were difficult.  I have to admit it made it very challenging to be the kind of teacher I had been, as my patience declined as well.  I continued to do most things I had done prior transplant, but it was harder because my energy level was so low.

Please describe what waiting for the transplant was like.
Prior to my transplant, I was dating Shari who told me that if she was a match she would donate one of her kidneys to me.  At the time, I was on transplant waiting list at Good Samaritan Hospital.  After Shari was tested and confirmed to be a match, as you can imagine, I was more than ecstatic!

Will you share some of your dreams and fears while waiting for a transplant?
My greatest fear before my operation was not surviving the operation.  Many people do not know it, but my mother had kidney failure and was also listed for a kidney transplant.  In 1996, after waiting many years on a transplant list in Phoenix, my mother finally got “The Call” and received a cadaver kidney.  Five days after her transplant she tragically and unexpectantly passed away.  It was because of that, that I feared the actual operation more than I probably should have.

One day, I made a pact with God and promised that if I survived the operation I would attend church every Sunday; and I have kept that promise. One year after my transplant, in 2004, Shari and I got married and continue to remain “connected” in more ways than the “obvious” one.

How has your life changed after transplant?
My life dramatically changed on April 11, 2003, when I woke up in the recovery room at John Hopkins following my transplant.  I instantly felt I had regained all the energy that had been gradually declining over the years, prior to my transplant.  Like many recipients, I realized then more than ever, just how precious each and every day is and try hard to take advantage of that.  The first “big” thing that Shari and I decided to do in 2006 was adopt a six-month old boy from Guatemala named Michael. I always wanted kids but because I married late I never thought that would be possible.  Today I “pretend” to have the energy needed to keep up with a teenager, which prior to my transplant, would have been truly impossible.  Three years ago I retired from teaching and spend a lot of time playing tennis, writing and promoting organ donation.  I am a volunteer with the National Kidney Foundation of Arizona, Donor Network of Arizona, Transplant Team Arizona and Transplant Community Alliance.

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Ed Ozier: A brief history of kidney transplant in Arizona

Ed has seen a few things in his life. He has served in Vietnam, got his bachelor’s and graduate degrees, and married the love of his life. He has had so many beautiful life moments to share over his lifetime. He has also had a very surreal timeline running parallel to these moments. He lived with kidney disease in a time that a kidney transplant went from science fiction to reality.

It all started with a bad case of gout, or that is what Ed attributed his pain to. He began getting the attacks in high school off and on. The attacks continued but stayed the same through his time in the Army. He had an added problem of poor eyesight, which he recognized right away in basic training when he couldn’t hit his targets. This turned out to be keratoconus, which is an added indicator of kidney disease. Upon an exit medical exam from the army, Ed was told that he had high blood pressure and albumin in the urine (an indicator of liver/kidney dysfunction), but there was no follow up required; thank you for your service.

After finishing military service in Vietnam, Ed was married to his wife Linda and finished graduate studies at Northern Arizona University. When a terrible gout attack left him nearly immobile, he became very concerned. He is thankful that he was young and skinny, or else his wife wouldn’t have been able to have helped him to the doctor.

His local doctor realized Ed’s condition was out of his scope and referred him to a kidney doctor in Phoenix. He advised him to leave immediately and that his condition needed prompt attention. Ed was disappointed because he was 16 units away from graduating, but he went anyway.

After making his way to Phoenix, he met up with his nephrologist, one of Phoenix’s first in the 1970s. He had his appointment and a whole lot of lab tests. The conclusion was that his kidneys were in terrible shape and that he was very sick. His kidney doctor notified him that he was on dialysis as of that moment.

This is what Ed considers to be the true beginning of his transplant journey. At the old Northwest hospital on 59th and Northern. It was the early 80’s now, and he was a regular at the dialysis center. He went three days a week after closing his business for the night. The staff there tried to make things fun because most spent quite a bit of time there. Every Wednesday night, they would watch the TV show Dallas together. The regulars would have time to catch up on their lives and support one another. Reality would set in when they noticed that someone would stop showing up. It was sometimes a sign of improving health or a transplant, but it was often a sign of decline or worse.

Ed, like so many others, immediately began the search for a living donor. His mother wasn’t a match for him but was for his sister, who was also burdened with kidney disease. And so, he was placed on the waiting list. He had a couple of false alarms of donors who didn’t end up being a match. But finally, the day came when his surgeon told him to prepare because they finally had a match. Ed remembers his surgeon with much reverence and respect. Dr. Van der Werf moved to the United States in the late sixties and established the Netherlands, Florida, and Arizona’s original kidney transplant programs.

His transplanted kidney was good and true for 14 years. In the last 3 of those 14 years, he noticed a slow decline in function. It was time to go on the list again. But this time, with a high antibody count, which worked against him on the waiting list. He also had different symptoms, one being pericarditis, which causes fluid and inflammation around the heart. Once the pericarditis was diagnosed, he began dialysis again. Except for this time, it was a journey of 54 months, or 4 and a half years, on dialysis. In those days, few people got transplants at all. But even less so that was highly sensitized. After his long wait, he was rewarded with a second (or third in Ed’s case) chance at life. He remembers waking up and being clear-headed for the first time in years. And with the meds not being novel and more streamlined, he didn’t have the same side effects from the immunosuppressants and steroids as the first time around.

This second transplant also stayed true for another 14 years. And the same as the previous time in the last 3 of those years, his numbers declined again. This time they were using IVIG to counter high antibodies. Plus, he had a former graft get infected. There were so many surgeries. But luckily for him, the new rules came out regarding kidney transplants. A CRPA (Calculated Panel Reactive Antibodies) calculator helped kidney patients get priority on the waiting list. This time he was on the list 9 months before he needed dialysis. Another 9 weeks of dialysis before he got his call. And that is the kidney he is thriving with until this very day, his fourth chance at life.

These days Ed looks forward to his advocacy work with the AAKP, time with his Transplant Team Arizona teammates, and most importantly, valued time with his family. He talks about how he got to go to Washington DC with the AAKP (he is a lifetime member) and advocate for some of the current kidney legislation making it’s way to the Senate. He found the representatives there to be very helpful overall.

Having a genetic link with his father with kidney disease, he decided to get into his family’s genealogy. He found links in every generation back that he had researched, showing nearly a hundred years of his family surviving with kidney disease, but never for very long.
He feels fortunate to be thriving with his siblings in this day and age, where medical advances can overcome such things.

The best advice for new transplant patients is to educate yourself. Your doctor may tell you things, but in the end, you are in charge of your care with the educated guidance of your medical staff. Make sure to speak up and be part of the medical team.

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Jennifer D’Oliveira

Jennifer D’Oliveira has been the volunteer chair of the Donor Dash Committee since its inception in February 2019; TCA’s annual fundraiser for the Living Assistance Fund. Learn more about the DonorDash here.

Jennifer D’Oliveira has been a businesswoman for 35 years in many different types of business, playing a strong role in Customer Service for most of that period. She has owned wedding coordinating and dog grooming businesses, and was the founder and president of the largest Pomeranian rescue in the state of Arizona for many years. She has recently opened a new business – Desert Bloom Aromatherapy.

She became heavily involved with Organ Donation 6 years ago when her best friend’s daughter passed away and saved 6 lives with her precious final gift. She volunteers her time to Donate Life Arizona and Transplant Community Alliance. She is the Fundraising Chair for Transplant Community Alliance, the Media Coordinator for Transplant Team Arizona, and the Race Director for the Donor Dash, which supports Transplant Community Alliance’s Living Assistance Fund.

She holds an Associate of Arts Degree in Merchandise Marketing and Product Development from The Fashion Institute of Design in Merchandising in Los Angeles and recently received a certificate in Aromatherapy from the Southwest Institute of Healing Arts in Phoenix, earning the designation of Clinical Aromatherapist.

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Melissa McQueen

Melissa McQueen is Executive Director of Transplant Families who works with parents and caregivers of children being listed for or already have received a lifesaving organ transplant to help guide them to support, education, and assistance to help them through this very difficult time.

Melissa believes that education and support bring hope and healing for families.   She is honored to volunteer with the OPTN/UNOS in their Pediatric Committee and their Data Advisory Committee where she helped co-author “What Every Parent Needs to Know”.  She has also been selected as leadership with Quality Improvement Collaboratives ACTION Learning Network (pediatric cardiac QI based out of Cincinnati Children’s Hospital) and Starzl Learning Network (pediatric liver QI based out of University of Pittsburgh Medical Center) to give input and help co-create materials for clinicians and families.  She worked on the spearheading committee that helped Donate Life America create National Pediatric Transplant Week (every year on the last week of every April).  She is the charter chair of the Heart Center Family Advisory Council and Alumni Family Advisory Council at Phoenix Children’s Hospital.   She is proud volunteer and editor of the newsletter for Transplant Community Alliance.

Melissa is a trained developer/engineer by trade who has worked at companies such as Honeywell – Aeronautics Division, APS, Wells Fargo, and Phoenix Children’s Hospital.  Most recently, she helped to develop “My journey with” applications covering patient education from diabetes to transplant for newly diagnosed families.  Melissa holds a Bachelor’s in Computer Information Systems from DeVry University.

When Melissa is not working, she loves hiking and traveling with her college sweetheart and husband, Brandon, and spending time with their three beautiful children: Alex, Maddie, and Dylan.  Dylan received his gift of life (heart) at 8 months old and is now a healthy and happy 12-year-old.

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Brian Brener

Brian-Brenner

Brian-Brenner

by Brian Brener

My name is Brian and I am the very grateful recipient of a heart transplant which I received at Cedars-Sinai Hospital in Los Angeles, California. I was born in South Africa 65 years ago with a rare congenital heart condition known as Congenitally Corrected Transposition of the Great Arteries (CCTGA) as well as pulmonary stenosis and dextrocardia.

The fact that doctors knew I had a problem when I was just one-year old and a complete diagnosis was known when I was 15 was in and of itself amazing considering that that occurred 50 years ago. I went to Guy’s Hospital in London when I was six and had a catheterization when I was 12. I remember my parents viewing it on an 8mm projector!

The condition reversed my ventricles with the right ventricle becoming the pumping ventricle. That ventricle, which normally pumps blood to the lungs, is designed for a pressure of 25/5 while it was actually subjected to 120/80. The doctors predicted that I would be fine until I was 55 when I would need a valve replacement. Even more amazing – they were correct as most people do not live this long without an issue. I was 57 when the ventricle deteriorated from the high pressure and I started having trouble with stamina and breathing. It was 2004 when I was told I was in Stage II heart failure and would eventually need a transplant. Up until then I had lived a fairly normal life as an IT professional, I was happily married and had three wonderful children. I played sports like doubles tennis, soccer goalkeeper, etc.

In 2006 a fortunate, in retrospect, event happened. I had numerous respiratory issues over the years with many bouts of pneumonia and bronchitis. I was finally diagnosed with Common Variable Immune Deficiency (CVID). I started receiving infusions of Immunoglobulin G (IgG) (which are antibody molecules) on a monthly basis. For those who understand transplants and rejection, this surely benefitted me later as I had no antibodies that would inhibit transplant.

In 2004, I consulted with Dr. Copeland at the University Medical Center (UMC) in Tucson. He became aware of my anatomy but told me I did not need a transplant at that point in time. In the years following, I was treated for heart failure by doctors at another facility but was considered a high risk candidate for transplant. I returned to Dr. Copeland at UMC in late 2008. He did a right heart (in my case left heart!!) catheterization and determined I had pulmonary hypertension and a transplant was not yet possible. With little time left to live, he inserted a left ventricular assist device, LVAD (RVAD in my case). He became confident that transplant was feasible and he believed, while others did not, that the LVAD would correct the pulmonary hypertension. He would later be proven correct. In July 2009 a catheterization was done and I was listed for transplant in September 2009.

As others have said, the LVAD kept me alive while waiting for a transplant but it was not a panacea. It did not fix valves, the right side of the heart or other issues. It required my wonderful wife to do a sterile dressing three times per week for many months. It was not an easy device to live with but what it did do was allow me to see my grandkids, visit friends, go out for dinner, go to the supermarket and the movies and I was able to continue to work full time from home.

In October 2009, I received THE call. We packed up all the LVAD gear and I drove myself through rush-hour traffic in Phoenix to Tucson for my heart transplant. I was prepped for surgery, wheeled into the operating room and was anesthetized. But physical inspection of the donor heart found it to be hard and diseased, which had not shown up in the pre-testing, and the transplant was called off. That was the first of five false alarms over an 18-month period.

In June 2010, Dr. Copeland left UMC and I was told they were no longer able to do my transplant due to the complexity of my heart issues. They contacted Jenna Rush, Transplant Coordinator with Cedars-Sinai Heart Institute. I went to LA for an evaluation and was listed shortly thereafter. Air ambulance service was pre-arranged and I began my wait. On one occasion, I presented with cold symptoms in the morning and received THE call again that evening so I had to decline. That gave rise to a humorous anecdote. My wife was with our grandkids when I called her and gave her the news. My eight-year old granddaughter started crying, but my five-year old grandson Craig said, : “Talia, don’t cry. The doctor will put the heart in the fridge until Grandpa is better!” Disneyland was in their future! On another occasion I was waiting on the runway at Scottsdale Airport for the air ambulance to arrive (which was 5 minutes from landing) when the transplant was again called off. It was a scary rollercoaster ride.

On April 27, 2011, Cedars Sinai and Dr. Trento found the right heart. My wife had left town that morning to visit our grandkids in New York. Our daughter flew with me to Los Angeles in a small Lear Jet air ambulance. We arrived there four hours after the call. Surgery started at 5.30 a.m. and my wife arrived from the east coast midway through the surgery. Bill Sears, Head of Cedars Heart Transplant Ambassadors, sat with my family throughout the surgery offering encouragement. The volunteer organization at Cedars is yet another fantastic component of their care. Dr. Trento completed my complex heart transplant surgery successfully.

The rest, as they say, is the rest of my life. I unfortunately needed a pacemaker but was discharged after 13 days. We stayed in Los Angeles for biopsies and post-transplant care. My body was extremely atrophied and recovery was slow, but I walked a lot and had some home physical therapy. After three months, I returned home to Phoenix but fly to Los Angeles monthly for checkups. I was fortunate to be entered into the Allomap trial for rejection and so have only had eight out of the 13 biopsies. I have had one small scare but no real rejection episodes. I started cardiac rehabilitation and have slowly gotten stronger. Last week I completed the AHA 5 km Heart Walk.

It was a long journey but the story has a happy ending. This is due to many people and many things, not the least of which is a supportive family. I am eternally grateful to my donor family whose generous donation made writing this story possible and to whom I have finally written after much contemplation.

Additionally, I am deeply indebted to Dr. Jack Copeland, formerly of UMC in Tucson as well as all the doctors, pharmacists, nursing staff and technical staff there who gave me not only excellent care, but became personally involved and treated me as much more than a patient. They enabled the future for me. I would also like to thank Jenna Rush, Transplant Coordinator, Dr. Alfredo Trento, Dr. Lawrence Czer, Drs. Kittleson and Patel, as well as many other medical professionals at Cedars-Sinai.

There are so many ways to donate – organs, money, emotional support and/or time.
My message is simple. Please be a donor. It saves people and changes family’s lives.