By Cathy Cassinos-Carr
Posted on October 17
Photography by NinStudio.com
When my mother was diagnosed with the breast cancer that later took her life, she said it was a “gift.” At first, this made no sense to me, especially since she was given only two to four years to live.
But then I began noticing the way her illness was changing her. She laughed more. She more boldly spoke her mind. She savored small joys. (Peet’s Italian Roast had never tasted so good.) She saw, for the first time and with absolute clarity, what really mattered in life.
These life lessons, important as they are, don’t come to most of us until fate knocks us a blow. Sometimes that blow is fatal. The lucky ones get a second chance, as did those in the stories that follow. They’re all grateful just to be here, and living life much the way my mother did—as a gift to be treasured.
Nikon Sandulyak: Celebrating the Gift of Sight
Nikon Sandulyak is 73, but he sees through the eyes of a child.“I look around, and I see the beauty that surrounds me,” he says. “Look at the cars—how beautiful they are! How beautiful the people are dressed! How beautiful nature is!”When you’ve been blind for 38 years and then suddenly can see again, even the most ordinary things inspire wonderment.
“He’s like Rip van Winkle,” says UC Davis surgeon and ophthalmologist Mark J. Mannis, M.D., who last May restored Sandulyak’s vision by implanting an artificial cornea in his right eye. “He went to ‘sleep’ in 1966, and woke up in the next century.”
It’s a tragic tale with a joyous ending—one that creates a palpable dramatic tension as Sandulyak and his wife, Klavdiya, recount the details during our interview in their Carmichael home. Although they speak in their native Russian, which is funneled through an interpreter, nothing is lost in translation, as theirs is a story best understood by the heart.
The couple were living in Moldova and raising two daughters, Olena and Nina, ages 6 and 7, when the accident occurred. In the midst of building a home, Sandulyak offered to help the construction workers, who had suggested he apply texturing to the outside of the house. “Lye was needed for the construction,” explains Klavdiya, “and that lye should have been prepared awhile before we used it.” As Sandulyak placed the chunks of lye into water, it began to boil. “And then it exploded, as if it were a bomb, all over his face.” As his wife tells the story, Sandulyak quietly stands up and walks across the room, in search of a tissue to dry his tears.
Thus began the endless months and years of being shuffled from one hospital to another, one doctor to another, one bleak prognosis after another. “There were many surgeries done on other people with my diagnosis,” says Sandulyak. “But there were no positive results. Why would I agree to such a surgery?” No longer able to work as a veterinarian, Sandulyak became a massage therapist; Klavdiya continued working as a math teacher. Life went on.
Decades passed, but the couple never gave up, eagerly scouring newspaper articles and medical literature for the latest news on sight-restoration surgeries. “In Russia, they do surgeries where they don’t replace the whole cornea, but add a prosthesis into the existing cornea,” Sandulyak explains. “They considered it a 100 percent success if you could just distinguish between the light and the dark.” When their daughters married American men and immigrated to the United States, the couple remained in their homeland until moving to California in 2003.
The Sandulyaks’ move to America had nothing to do with their search for a cure. Indeed, they did not believe a cure was possible. “Right before we left for this country, we went by the clinic [in Odessa] and asked whether they performed such surgeries in America, and they said no,” Sandulyak says. “So we were convinced no one could do this surgery.”
It was their son-in-law, Mike DeWeese, who led the Sandulyaks to Dr. Mannis. After several consultations, Mannis—one of a handful of U.S. surgeons trained in a new artificial corneal-implantation procedure with a device called the Dohlman Keratoprosthesis—determined that Sandulyak was an ideal candidate for the surgery. “Mr. Sandulyak was not a candidate for standard corneal transplantation because he had sustained bilateral chemical burns,” explains Mannis, professor and chair of UC Davis’ department of ophthalmology and vision science. “Our two options for such patients are to do stem-cell transplants or to consider keratoprosthesis (artificial cornea).” The Dohlman Keratoprosthesis is a plastic device that is mounted onto a donor cornea, then stitched into the front of the patient’s eye. “The donor cornea is actually sutured into the patient, and it’s this combination that has made it so successful,” says Mannis, adding that UC Davis’ success rate is higher than most, but that overall complication rates for the procedure remain significant.
Mannis and his team have now performed the procedure on a total of five patients; Sandulyak, who received his new cornea on May 27, was their first.
The surgery was performed on a Thursday, remembers Klavdiya. As soon as the bandages came off the following day, she says, her husband started yelling. “Patients from other rooms started coming in to see what was happening,” she says, laughing. “The room was full of people, and he was yelling, ‘Good America! Good Professor Mannis!’”
“I’ve kissed Dr. Mannis’ hands many times,” adds Sandulyak, visibly excited. “I’ve actually kneeled before him and kissed his feet. The only way I was able to obtain my sight back is because of the technological advances in ophthalmological science in America, and of course, thanks personally to Dr. Mannis. I will be ever so grateful to him for as long as I live, and my whole family is grateful: my wife, my daughters.”
The best part, he says, is that he can now get around on his own.
“For 38 years, I was holding onto my wife’s arm,” he says. “Now I can move independently. I’m very excited, very joyous.”
But sometimes his joy gets him into trouble—like when he goes shopping.
“My daughter will take me to the store, and she warns me, ‘You need to behave yourself, because people will be looking at you!’” he says. “But when I get there, I see so much beauty. Everything is very colorful, even cans. Everything is so beautiful!”
Misty Cargill: HELLP Syndrome Survivor
If you don’t know what HELLP Syndrome is, you’re not alone. Misty Cargill had never heard of it, either. But firsthand experience has made her an expert.
Cargill was 29 (she’s now 30) and about 6 months pregnant with her second child this past July when she began experiencing “weird phantom” pains underneath her right rib cage. The pain would radiate through her back. “I couldn’t eat. I couldn’t sleep. I was just miserable,” says Cargill during an interview in her Foothill Farms home, where she lives with her husband, Shane, 6-year-old Kelly and baby Grace. “We thought maybe I’d pulled something in my back. They even bought me a new $200 chair at my [accounting] job.” When lab tests revealed nothing, Cargill’s obstetrician surmised it was indigestion.
But the pain continued, and it began to move. An ultrasound was ordered, and her liver, gallbladder and kidneys all tested normal. Indigestion still seemed the likely culprit. Cargill continued popping antacids.
Things got worse. Edema set in. “My legs and feet began to swell to the point where I couldn’t wear shoes,” says Cargill, who also had developed tension headaches and was still having trouble sleeping. When her blood pressure spiked at the end of August, Cargill began being monitored more closely with twice-weekly nonstress tests to check the fetal heart rate. But the tests showed nothing out of the ordinary until Oct. 2.
“My blood pressure started doing weird things, jumping all over the place, and the baby wasn’t moving that much,” recalls Cargill. She was sent to Kaiser Permanente Morse’s labor and delivery unit, where her blood pressure tested normal, and she was sent home.
On Oct. 8, Cargill woke up around midnight, “just not feeling right.”
“I was pacing the house, there was just something wrong. . . . I couldn’t put my finger on it,” she says. “I started throwing up, my head was pounding, I had cold sweats.” The next morning, she hit the shower around 6:30 a.m., intending to go to work as usual, when her husband stopped her. “He said, ‘Why don’t you call the hospital and tell them what’s going on?’” remembers Cargill. When she called, she was advised to come in.
Tests revealed that Cargill had developed HELLP Syndrome, a unique variant of the preeclampsia (toxemia) that affects 5 to 7 percent of all pregnant women in the United States. HELLP, which accounts for between 2 and 12 percent of preeclampsia cases, stands for hemolysis/elevated liver enzymes/low platelet count, and can be fatal to both mother and baby, with a maternal mortality rate of 3.5 percent. Because Cargill had not previously tested positive for preeclampsia, the sudden onset of full-blown HELLP came as a surprise. But once it was discovered, time was of the essence, says David Yukio Uyeno, M.D., the OB-GYN who on Oct. 9 performed Cargill’s Caesarean section.
“In our pregnant patients, the cure for preeclampsia or HELLP Syndrome is getting the baby delivered,” says Uyeno. “In the case when the mom’s really sick, we do think of Mom first, even at the expense of the baby.” When Cargill’s blood platelet counts plunged to dangerously low levels, Uyeno took urgent action. “Even though her baby was only about 34 1/2 weeks, we needed to deliver the baby,” he says. “Misty’s platelet count got as low as 39,000, postpartum. If we had waited for the platelets to drop that low before delivering her, we may have had a less happy ending.” A vaginal delivery was tried first, but Cargill did not dilate quickly enough, necessitating the C-section.
Cargill shudders to think of the physical pain and emotional terror she endured that night. “At one point I was just balling, because gut instinct told me someone was going to die,” she says, her voice quivering as she holds back the tears. “I was so afraid that this baby I wanted so bad could already be dead, or that I would die and she would never get to know the mom who loves her.”
When baby Grace was delivered, Cargill didn’t hear a sound. “I started crying, because I thought she had died. But then I heard this small, scrawny little wail that turned into this huge wail.” Retorts Shane: “And there’ve been loud wails ever since!”
Grace weighed 4 pounds, 2 ounces at birth, and has since been steadily growing and gaining weight. “She’s small, but she isn’t going to have any complications,” says Cargill. “She’s right on target. She’s feisty.”
Perhaps the apple doesn’t fall far from the tree.
“Misty has a lot of will and determination, and when she sets her mind to something, she’s going to do it,” says Shane, an information technology support provider for the Stanford Home for Children. “I have no doubt that that’s what helped her through this ordeal.”
“Having my baby has definitely made me thankful,” adds Cargill. “I’m thankful for Shane, because he stood by me even at my worst, and I also have a new appreciation of my own strength. But most of all, I’m so thankful to have Grace. She’s my miracle baby.”
Jason Akaba: A Big-Rig Accident Gave Him a Small Chance To Live
At 5 a.m. on the morning of Oct. 22, 2003, Carrie Elston-Akaba stood at the door and kissed her husband goodbye as he left for work. Then she told him to kiss their 2-month-old daughter not once, but twice. “I don’t know why I did that,” she says, reflecting back. “But sometimes I wonder.”
Fifteen minutes later, Jason Akaba was underneath a big rig, and TV reports were calling it a fatality.
No one knows how the accident happened, except for this: Akaba was heading east on Highway 50 when his silver Honda Accord smashed into the rear of a big rig near Sunrise Boulevard. His car was dragged beneath the rig for about a mile when the truck driver heard a “pop,” thought he’d blown a tire, and pulled over.
The whirling scene at Mercy San Juan’s trauma center that morning was “surreal,” says Elston-Akaba, who had the shock of her life when she walked into TICU (trauma intensive care unit) and saw her “big, bald Asian husband” on life support. “When I saw him, it was exactly the way they’d cut him out of the car,” she says. “He was completely on life support, with tubes in his mouth.”
Akaba’s face was crushed, his forehead was sliced, and his brain, chest and lung injuries were so severe that doctors gave him less than a 25 percent chance to live. Fortunately, he had fallen into good hands that morning, with a team led by Mark P. Owens, M.D., assistant director of Mercy San Juan’s trauma center. “Jason had a skull fracture, a huge subdural hematoma and multiple other bleeds in the brain,” Owens explains. “The injury looked so profound that we weren’t sure he was going to have much of a prognosis at all.”
Mercy San Juan would be Akaba’s home for the next two months. He endured a remarkable 36 operations, including three brain surgeries and three chest surgeries. There were quite a few scares along the way, remembers Elston-Akaba, including Halloween night, when he had emergency lung surgery, and the time right after Thanksgiving when he got a massive infection and ran a temperature of 107. “At that point, you just start praying,” she says.
On Dec. 29—his wife’s 28th birthday—Akaba was transferred to Mercy General for rehab. “It was the best birthday gift I could have ever had,” says the now 29-year-old Elston-Akaba, grinning.
But there was still a tough road ahead. In addition to rebuilding his physical strength and learning to walk again, Akaba’s memory loss meant relearning things a child learns, from brushing his teeth to dressing himself. “He had to learn everything all over again, and he did it all,” says Elston-Akaba, who coached him along the way. Akaba’s immediate memory is good, but he’s lost pieces of the past. “He remembers our honeymoon, but he doesn’t remember getting married,” says Elston-Akaba. He also had to get reacquainted with their child, Jaylyn, now 19 months.
Once Akaba returned home in late January 2004, “things started coming back to me,” he says. “I was so happy to get out of downtown Mercy.” His main focus now, he says, is finding a job. “I’ve been cleared to go back to work since November,” says Akaba, a youth counselor who worked with at-risk kids. (Elston-Akaba works in banking.) He’s also behind the wheel again, having scored 100 percent on his driving test.
Although the Akabas had been married just a little more than two years when the accident turned their lives upside down, they’d been together since meeting in 1997 in a criminal justice class at California State University, Sacramento.
“We were always good about saying ‘I love you’ every day,” says Elston-Akaba. “But after a trauma like this, you realize even more just how important it is.”
Elston-Akaba’s support was definitely a factor in her husband’s recovery, says Dr. Owens. “The importance of having someone pull for you was absolutely real in this young man’s case,” he says. The Mercy staff also was pulling for Akaba. “For us,” says Owens, “it was just to keep going, and not give up, through weeks and weeks and weeks and weeks. And thinking positively, and conveying that to the family, while at the same time letting the family know it is what it is—and that sometimes things are out of our hands.”
The Akabas have nothing but praise for Owens. “He’s a great doctor,” says Jason, who turns 31 this month. “When he sees me, he gets a big happy face, because he knows what I went through, and he was there through all of it.” Owens’ brother, Leon J. Owens, M.D., the director of Mercy San Juan’s trauma center, also was instrumentally involved in Akaba’s care.
Blood donations also played a big part in Akaba’s recovery, inspiring the Akabas to set up a blood drive this past Oct. 19, three days before the anniversary of the day he almost died. “Jason needed 12 pints when he was hospitalized,” says Elston-Akaba, “and we got about 90 usable pints out of the blood drive. I want to do this every year from now on to say ‘thank you’—thank you for Jason’s life.”