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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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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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427 days waiting, a Berlin heart, and a new lease on life.

By Melissa McQueen.

When this interview was conducted, it was in Spring 2020, the beginning of the COVID-19 pandemic. Kim and her son Liam are in Montreal. Kim’s son had just been interviewed for the local news station. His message for the reporter was clear, his normal was now everyone else’s normal. He says that if you are stuck at home and confined, don’t worry about it, transplant recipients do this all the time. He acted well beyond his 8 years as an advocate for his community in the interview, encouraging others to stay home because the virus was potentially dangerous to those that immune suppressed. The Morris family currently lives in the province that has been the hardest hit in Canada.

Liam has been interviewed quite often and is known throughout the province and the country. As most transplant kids, they are a celebrity in their own right.

When Kim’s son was born he looked like any other baby. One day, while at daycare, he started feeling nauseous and overall unwell. She would bring him to the clinic every time and every time they would tell her it was a stomach bug and that he needed rest and to stay hydrated. Eventually Kim got sick and tired of the repetitive diagnosis and took him to the Emergency Room of Montreal’s children’s hospital. Right away the cardiologist came to look at him and ordered an echocardiogram. He came back saying that her son was very ill and that treatment would be a long process. The team assured her they would do everything they could to save him. It was very much an overnight situation of having a healthy child to one that is near death.

For the first 6 months they thought he had myocarditis. They initially thought he had a virus. But then the diagnosis came back as Dilated Cardiomyopathy of the Left Ventricle. He also had very violent ventricular arrhythmias. He was put on almuturon right away. There were more genetic test done. Liam has three genetic mutations. LMNA gene is the first mutation. This can also be the cause of muscular dystrophy. They couldn’t stabilize him and they were losing him. Liam was quickly placed on the Berlin heart. The Berlin heart beats for the heart giving it a chance to rest. He spent a full year on the Berlin heart. They were in the hospital a total of 427 days. During this time he had 2 strokes, one pump malfunction and finally transplant in July of 2018.

Liam was in the hospital for 10 days after transplant. For the entire time he was there he told everyone that he was getting his heart for his birthday. When he was released after transplant it was on his birthday. The first thing they did after discharge, was go to a 5 star restaurant in Montreal so that he could have lobster, king crab and Rockefeller oysters and crepes suzette for dessert. The restaurant treated him to the whole nine yards. That night when Kim tucked Liam into bed she was starting to reflect to Liam and she said, “What a nightmare we have just been through.” Liam stopped her and said “Mom this isn’t a nightmare. Usually in nightmares people die. Nightmare’s don’t end well”. Her favorite souvenir was to tuck him into his own bed.

Now Liam is back to his fun loving self. It took a long time. Immediately after they were so burnt out and tired. This summer is the first time that he is feeling back to his normal self.

In the future, Liam aspires to be a surgeon and tries to get the best marks he can. He is is an avid reader. He rides his bike and plays tennis with his mother. He almost associates high blood pressure that comes with exercise with heart failure. But he is learning to overcome that with time.

Families tend to fall into one bucket or another. What doesn’t break you makes you stronger. You definitely value life more. Sometimes life can be difficult but you move beyond those challenges to live your best life.