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My sister Whitney was everyone's best friend – whether she just met someone or had known them her whole life. She was so beautiful inside and out! Whitney wanted to be a model someday, and she was going to a modeling coach. She was involved in every activity from girl scouts to track, basketball, volleyball, speech and cheerleading. But her passion was modeling and fashion. The walls of her room were covered in pictures torn out from magazines of models, hairstyles, jewelry and prom dresses.
Jeff and I met when we were freshmen in college and were married in 2006. Jeff is a pharmacist and I am a teacher. We were thrilled to find out that we were having a baby and Abigail was born in June of 2009. My pregnancy was perfectly normal and although she arrived two weeks early, there was still no indication that something was wrong. She had some issues with jaundice at birth but with the help of the bilirubin blanket - a device used to treat jaundice - it seemed it was getting better. At six weeks of age, I took her to the pediatrician because she just seemed yellow still. Her liver numbers and bilirubin were incredibly high so they sent us to the hospital immediately.
Jesus was two-months-old when he received his new liver. He spent a week at Children's Hospital & Medical Center and was then transferred to The Nebraska Medical Center. After his transfer, he waited six days for a new liver.
In December 2009, Tim and I found out that we were expecting our second child. Our son Noah was just 16-months-old at the time. We were elated that we would soon be adding another member to our growing family!
I was found to have a kidney disease called Alports Syndrome. It is typically associated with bilateral nerve deafness. I did not lose kidney function until I was 18 and in my first year of college. I was relatively healthy except for my kidney failure. I was active in athletics in high school and had maintained my fitness until my kidney function deteriorated to the point I was unable to continue heavy physical exertion. I was on renal hemodialysis for approximately 4 months prior to my first transplant.
I had a head on collision on Jan 2, 1983. I was a junior attending USC and had to have reconstructive surgery on my face and wore a neck brace for a few months. I had a non-displaced fracture in my neck that over time became calcified, and eventually led to the need for corrective spine surgery using donor bone. Just prior to my surgery, I had severe pain in my feet that doctors thought was attributed to my diabetes. I also had decreased range of motion in my arms and legs. Much of this was thought to be from my long stay at the Med Center while I recovered from kidney and liver failure.
When our 22-year-old son Tim learned that he had a brain aneurysm, he had no choice but to have an operation to repair the weakened wall of the artery. Without surgery, his excruciating headaches would continue and a rupture of the artery would bring instant death. The operation corrected that problem, but hours later Tim had an adverse reaction to the trauma of surgery. His brain tissue swelled severely and the doctors could not control this.
We had no choice when we were told that Tim would not survive. We kept vigil through the night and hoped and prayed, but we were powerless to do anything to change the situation. Tim was dying and we could not prevent this. By morning Tim was brain dead.
I first came to know Carmelita and Jesse on the telephone. Their son, Zach, had been referred to us by his neonatologist for liver and small bowel transplant evaluation. From the moment I spoke to them on the phone, I could hear the love they had for their child, and the faith they held in their hearts. Twenty-four hours later, I met them in person, and I witnessed that same love and faith in their eyes, and saw it in the way they held their son. Three days later, Zach was listed for liver and small bowel transplant, and the race for his life began. Would he get organs before he succumbed to the complications of his liver disease?
Daily, our team supported him medically, and supported his parents emotionally. The waiting was agonizing, and Zach’s deterioration became more and more pronounced each day. Zach’s kidneys were failing, his blood pressure was dropping, and his lungs were retaining fluid. The incredible fluid build-up in his belly further made his breathing difficult. He became increasingly disoriented, first evidenced by his fussiness, then progressing to an altered mental status. Eventually, he rarely woke, and when he did, his eyes that had once been delightful, were dull and unfocused.
My daughter Daisy belts out show tunes like Ethel Merman. “I can’t believe she took you away from Broadway,” a nurse once told her, referring to our move from New York to Omaha. Annie. Dreamgirls. Mama Mia. Name it, she’ll sing it, over and over and… Not surprising, given her sparkly spirit. And a fact that surprises everyone who meets her: Daisy spent her first seven months in the Neonatal Intensive Care Unit, coddled by a captive audience of care-takers.
In February, 2003, Dais was born with Gastroschisis, a rare congenital defect in which her large and small intestines developed outside her body, in the amniotic fluid. After birth, surgeons whisked her off to the O.R. and attempted to save her bowels, which were mostly necrotic. Two weeks later, a majority of her intestines were removed. Daisy’s new diagnosis (Short Gut Syndrome) and anatomy (or lack thereof) made her unable to absorb enough nutrients. She survived on tube feeds and TPN—Total Parenteral Nutrition, an IV fluid which contained a fat emulsion that often destroys the liver. Fortunately now there’s Omegaven, an omega 3-based lipid solution made from fish oil that can reverse or ameliorate liver disease.
In the spring of 1988, my senior year of high school, I was diagnosed with mononucleosis and sent home with instructions to get lots of sleep and limit my activity, as well as follow up with the doctor in two months. The follow up turned out to be a referral to see an internal medicine physician as my liver function tests had not improved.
After several weeks of tests I was diagnosed with a liver disease called Primary Sclerosing Cholangitis, In primary sclerosing cholangitis (PSC), the bile ducts inside and outside the liver become inflamed and scarred. As the scarring increases, the ducts become blocked, causing liver damage. This disease is not commonly found in eighteen year old girls, and physician who diagnosed me basically sent me home with very little hope that my disease could be cured.
Sybil Jackson has a big heart. “What keeps me going is the fact that, at the end of the day, I have made a difference in another individual’s life,” says Jackson, 35, a one-time manager for a group home for the developmentally disabled. What also keeps Jackson going is a life-saving gift she received on Memorial Day, 2009: A new heart.
Like many transplant recipients, news that she would need a new organ came as a shock. “I thought I just had pneumonia,” says Jackson, who, in 2003 – three months before her wedding – got a double diagnosis: Congestive heart failure and dilated cardiomyopathy, a condition in which the heart becomes weakened and enlarged and cannot pump blood efficiently. She was 27. “My doctor whisked me back into a room and asked, ‘Do you know how sick you are? You need a transplant. If you don’t get a transplant, you’ll be dead in five to ten years.’”