Nov. 21, 2017 | Xavius Hymes, of Pine Bluff, has had a lifelong support group to help him mange sickle cell disease.
Now the 19-year-old is looking to the future and the possibility of becoming a doctor to care for patients like himself.
Diagnosed at birth, doctors say Hymes has always been proactive in taking care of himself which helped prevent disease complications. He meticulously drinks plenty of water and eats healthy food.
“I can’t take all the credit,” Hymes said. “I’ve had great doctors from the beginning. My mom and grandparents play a big role in making sure I stay healthy.”
Sickle Cell Disease, a hereditary blood disorder, effects about 100,000 Americans. In patients with sickle cell, some red blood cells become stiff and c-shaped like a sickle instead of round. That makes it difficult for the cells to pass through tiny blood vessels that carry oxygen throughout the body, causing many complications including painful flare-ups that require hospitalization.
Hymes recently moved from the pediatric sickle cell clinic at Arkansas Children’s Hospital to the Adult Sickle Cell Clinic at UAMS. Since it opened in 2014, the adult clinic has been an invaluable resource for hundreds of patients living with the disease in Arkansas. Leigh Ann Wilson, a licensed certified social worker, is an integral part of transitioning patients from pediatric to adult care. She works on both sides and remains a constant for patients once they become adults.
Megan Davis, M.D., is a palliative care physician who treats patients with sickle cell disease. She says the lifespan for patients with sickle cell has doubled since the 1970s thanks to a greater understanding of the disease and advancements in treatment.
“The discovery that hydroxyurea can treat sickle cell is one those advancements,” Davis said. “Hydroxyurea is a medication that helps the patient produce more red blood cells that don’t sickle, which will reduce the frequency of painful episodes.”
This year the U.S. Food and Drug Administration approved the amino acid, L-glutamine, as a treatment for sickle cell patients. L-glutamine is a powder, given orally, to reduce sickle cell crises. During clinical trials, patients taking the L-glutamine had fewer sickle cell crises compared to those taking the placebo.
Another treatment choice is stem cell transplant. The transplant replaces the patient’s bone marrow, which prevents the body from producing abnormal blood cells. While considered a cure for the disease, transplants require a matched donor and sometimes have severe side effects.
“The advice I give to all my patients is that it’s important to take an active role in your care. Partner with your physician and be an active member of your health care team,” Davis said. “That’s when patients have the best outcomes.”
Hymes recently graduated from the University of Arkansas at Pine Bluff with a degree in biology. He’s taken the Medical College Admission Test with hopes of one day becoming a hematologist.
“I was in and out of the hospital as a child. Doctors and other health care professionals have had a big impact on my life. I would love to make that same impact in the lives of others.”
Nov. 13, 2017 | Charles Goins was unsure exactly what ailed him, but he knew the result was excruciating pain in his abdomen.
When the discomfort began in December, the 69-year-old Warren native realized immediately that something was wrong. He spent the next several days in a hospital with a pain he had never experienced before and his return home was short-lived.
“The next morning the pain returned, I was in the ambulance coming back to Little Rock,” said Goins. “It was very, very painful.”
Goins was in and out of the hospital for the next several months, all the while, answers as to what caused his discomfort seemed as elusive as finding relief. For an active person like Goins, who unintentionally lost 60 pounds, those months were agonizing.
There was no fishing, no hunting and no yard work because the pain was too much.
“It was miserable,” he said. “I wasn’t strong enough to do anything. Some days, I walked out to my truck and could hardly make it. I got so weak it was unbelievable. I couldn’t sleep, I couldn’t eat and didn’t want to eat. I honestly thought I was going to die.”
In August, during another hospital stay, Goins was transferred to UAMS.
A scan revealed Goins had chronic pancreatitis, the inflammation of the pancreas, and an abscess on his pancreas. Goins was then referred to Benjamin Tharian, M.D., an interventional gastroenterologist, director of endoscopy and assistant professor in the UAMS College of Medicine’s Division of Gastroenterology and Hepatology.
“The most common cause of pancreatitis is gallstones and alcohol abuse. The pancreas’ main function is to produce digestive juices and enzymes and insulin that remain inactive within the pancreas,” said Tharian. “During an episode of pancreatitis, there is a release of active enzymes within the pancreas, which automatically digests the organ. As was the case with Mr. Goins, fluid can leak out of the pancreas during this process and form a pseudocyst.”
The majority of pancreatic cysts will improve and disappear on their own, Tharian said, but other times, as with Goins, intervention is required. To avoid an invasive surgery and a long recovery time, Tharian offered a procedure known as endoscopic-ultrasound-guided cystogastrostomy.
“The special camera equipped with the ultrasound goes through the mouth and into the stomach at which point a hole is made in the stomach wall to access the cyst followed by placement of a stent under endoscopic ultrasound guidance,” said Tharian. “Then, the cyst drains into the stomach and its contents are eliminated by the body.”
The procedure itself typically takes less than half an hour and often requires an overnight stay for observation. Tharian said he has started sending patients home the same day of late, with equally good outcomes. Patients return after a few weeks for a follow-up scan to see if the cyst has completely collapsed. If so, a brief outpatient endoscopic procedure is done to remove the stent.
The procedure is advantageous to patients like Goins looking to avoid major surgery and a strenuous recovery.
“I couldn’t have stood surgery, I don’t think I was strong enough,” said Goins, who had the procedure in August. “The recovery at UAMS was so quick and easy. I went to getting well immediately.”
A few months following his surgery, Goins is almost back to full strength, has gained back 20 pounds and most importantly has returned to the active lifestyle he enjoys.
Tharian has done more than 60 procedures of this kind over the last 18 months, with excellent outcomes comparable to those results seen elsewhere in the country.
Nov. 1, 2017 | Randy Edwards is moved to tears when he talks about how far he’ll go to make sure his wife is happy and well. He says he felt helpless in February 2017 when Leah Edwards, 29, came down with pneumonia and wasn’t getting better.
In April, Leah Edwards was vomiting and struggling to breath. She describes the pain as feeling like a python had wrapped itself around her chest.
“My mind was racing 100 miles an hour,” Randy Edwards said
. “I knew something was really wrong, that it was more than a regular sickness. I wanted the best care I could get for her.”
Edwards drove his wife 70 miles from Kingsland to UAMS. She was admitted right away. He found out UAMS doctors were concerned she still had pneumonia after so long and performed a bronchoscopy.
“She has pulmonary alveolar proteinosis,” said Nikhil Meena, M.D., an interventional pulmonologist and assistant professor in the UAMS Division of Pulmonology and Critical Care. “That means her body is no longer able to clear out the buildup of a substance the lung ordinarily needs to keep its air sacs open for breathing.”
That substance is surfactant, a fluid secreted by the lung’s air sacs. Its purpose is to keep the air sacs from collapsing. But in someone with pulmonary alveolar proteinosis, or PAP, the fluid builds up in those air sacs and causes shortness of breath because that air sac cannot contribute to breathing.
PAP is a rare disease, present in less than 10,000 people in the country.
“When I found that out,” Leah Edwards said, “I felt like my life just stopped right there. I’m in my late 20s, healthy and active. Now I’m learning I have to be on oxygen for the rest of my life. This isn’t supposed to happen. It was very hard to take.”
Sitting in the healing garden outside the UAMS Cancer Institute, the couple hold hands and tell each other jokes. They’ll be married six years this December and say they plan to make
the most of their time together in spite of the news the received earlier this year. Leah Edwards says she’s even started wearing red lipstick as a symbol.
“I call it my courage lipstick,” she said. “I used to look at this oxygen tank as a grim reminder that I’m dealing with this disease. Now I look at it as a reminder that I’m strong. I’m brave. Hopefully that will shine through and encourage other people.”
“It took me a while to wrap my head around it,” Randy Edwards said. “But it’s a part of life now. We just keep putting one foot in front of the other.”
Edwards now has to come in for treatment every three months to have her lungs cleared of the surfactant. Meena says the treatment consists of putting the patient on a breathing machine through a breathing tube with two tubes, one to wash all of the surfactant out of one lung using about 25 liters of saline and the other to help the other lung breath. So far, she’s had two cleanings, one for each lung.
“Many patients go into remission after three to four years of lung lavage,” Meena said. “It seems that their bodies are once again able to clear the surfactant on its own. We’ll have to monitor to see if that is the case for Leah.”
“Dr. Meena and his staff are very compassionate,” Leah Edwards said. “I feel like he understand how troubled we were and truly cares for us. He told me, ‘It may not be an easy journey, but we’re going to take care of you. You’re going to be okay.’”
“I wake up every morning and pray for her,” Randy Edwards said. “She has good days and bad days. But as long as there’s life, there’s hope. Don’t ever give up hope on anything.”
Oct. 23, 2017 | Whether it’s her first child or her fifth, the postpartum trip to the doctor can be a hassle for a mother. The UAMS Center for Distance Health has started a new program that will make that visit more convenient.
“Some of our patients travel a very long way to deliver here at UAMS,” said Nirvana Manning, M.D., an associate professor in the UAMS Department of Obstetrics and Gynecology in the UAMS College of Medicine. “When they come here and have a baby, it’s often very cumbersome for them to travel back six weeks later for a postpartum visit.”
Recently, UAMS has been using telemedicine to make that visit easier for some patients. Women can visit with a doctor through a laptop, tablet or smartphone.
Nikki Talley had her postpartum visit from a sectional sofa inside her Sheridan home. While her newborn son,
Levi, rested comfortably in her arms, she dialed in for her appointment with Manning.
“Are you feeling okay?
“I’m feeling good. We’re pretty much back to our normal activities and getting acclimated to having three kids.”
The Talley family leads a busy life. Nikki Talley said it was a welcome relief to not have to dress Levi and his older brother and sister, load them into the car, and make the 45-minute drive to Little Rock.
During a virtual visit, Manning asks the mother questions about her overall health. She’s also able to call in prescriptions, if needed, and says it’s a good opportunity to talk about postpartum depression if a patient is having symptoms.
“If there is something that would require a face-to-face appointment, we schedule it at that time,” Manning said.
The program is still in its infancy, so providers are targeting women who are at low-risk for pregnancy complications to give them a chance to work out any issues.
Telemedicine was pioneered at UAMS starting in 2003 by Curtis Lowery, M.D., chair of the Department of Obstetrics and Gynecology.
“Technology has come so far. We’re fortunate to have Dr. Curtis Lowery working in our department. He’s been an innovator and leader in the telemedicine world,” Manning said.
Manning says there is room for growth with this program, including scheduling routine visits during pregnancy.
Oct. 18, 2017 | Most patients find out they have chronic lymphocytic leukemia after a regular visit to their primary care provider. This blood cancer, commonly called CLL, is most often diagnosed in older patients.
It happened this way for Bill Wrentz, 67, of Cabot. Wrentz was scheduled for a visit with his primary care physician in 2013 when his doctor asked him if he’d recently had the flu.
“He noticed my white blood cell count was a lot higher than it should have been,” Wrentz said.
Wrentz’s doctor scheduled a follow-up appointment for three weeks later saying, if the illness had run its course, his numbers should be back in normal range.
“At the next visit, they were higher than before,” Wrentz said. “Since I wasn’t showing any other symptoms, he suspected CLL and referred me to an oncologist, who confirmed that diagnosis in January 2014.”
Chronic lymphocytic leukemia is different from other cancers in that it’s often not treated right away. Leukemia specialist Peter Emanuel, M.D., director of the UAMS Winthrop P. Rockefeller Cancer Institute, says CLL progresses very slowly. The only way to cure it is with a bone marrow transplant. Since most CLL patients are elderly, a transplant would be too toxic and not worth the risk.
“So we control the disease,” Emanuel said. “The first several years after diagnosis, patients typically don’t have any symptoms.”
Wrentz started seeing Emanuel because he wanted a second opinion. About eight months after his diagnosis, Wrentz’s original oncologist wanted him to start chemotherapy.
“I was not comfortable with the idea of starting treatment,” Wrentz said. “I felt fine.”
Wrentz says a friend of his, a physician in San Antonio, listened to his concerns and agreed based on Wrentz’ numbers that it could be too soon to start treatment. He suggested Wrentz go to an academic health institution like UAMS.
“I was fortunate to get an appointment with Dr. Emanuel, considering his busy schedule. It was September 2014.” Wrentz said. “He looked at my numbers and agreed I wasn’t ready for treatment.”
Since then, Wrentz has been going to the Cancer Institute quarterly to have his blood drawn for monitoring. His cancer is progressing, but Emanuel says he hasn’t yet reached the point where he needs treatment. Beginning treatment earlier, Emanuel says, will not cause him to live longer.
“It’s to his advantage to wait,” Emanuel said. “He’s a competitive golfer. Not having chemotherapy has allowed him over the last couple of summers to compete at a high level without having to worry about treatment or its side effects.” Wrentz was named 2016 and 2017 Super-Senior Player of the Year by the Arkansas State Golf Association.
“I’m very happy and comfortable with Dr. Emanuel,” Wrentz said. “He’s up on the latest research with treatment of disease and that give me a lot of confidence. He never makes me feel like he’s in a rush and takes the time to answer all my questions.”
Emanuel says in the past three or four years, there have been new therapies for treating CLL that are FDA approved and others that are nearing FDA approval.
“The outlook is better. We’re not quite curing it yet. But there are lots of different options available to us.”
Oct. 12, 2017 | The past year and a half has included many challenges for Josephine Guiden — being diagnosed with cancer, then chemotherapy, surgery and radiation treatments— but none of them have snatched her passion for life.
“There’s power in knowing you have to be positive about life,” said the 70-year-old Little Rock resident. “You only come this way once and you have to make the best of it while you’re here.”
Guiden’s taxing journey began in May of 2016 when she discovered a knot in her breast under her right arm. She recognized immediately it could be cancer.
“It was shocking, but through years of mammograms and exams, physicians tell you what the knot will feel like,” she said. “You don’t quite get it then, but when I felt that knot, I knew it was malignant. I knew it was cancer.”
She called her doctor and had a previously scheduled mammogram moved up, but in the meantime, went on a bus trip to New York with the Patrick Henry Hays Senior Center in North Little Rock.
“I had lots of fun,” she said, “but my energy level was low.”
When she returned, her mammogram and biopsy confirmed what she already suspected: breast cancer. However, at stage 3 it was more advanced than she expected.
“There was anxiety and fear when it was confirmed and it was so advanced that I was upset with myself,” she said. “Even though I expected the diagnosis, I came home afterwards and had a good cry. But I knew I had to stay positive, I had to pray about the situation and that’s what I did. I told God, ‘I choose life. I want to live.’”
She was shepherded through the next several months of treatment by Daniela Ochoa, M.D., breast surgeon in the UAMS Winthrop P. Rockefeller Cancer Institute and assistant professor of surgery in the Division of Breast Surgical Oncology in the UAMS College of Medicine; Issam Makhoul, M.D., director of the UAMS Division of Hematology/Oncology and associate professor in the College of Medicine; and Loverd Peacock, M.D., radiation oncologist in the Cancer Institute and faculty member in the Department of Radiation Oncology in the College of Medicine.
“They were my guardian angels,” said Guiden. “I was placed in the midst of three great doctors who made me feel so special that no one could have ever convinced me that I wasn’t their favorite patient.”
Ochoa said the whole-team approach is one of the benefits to breast cancer treatment at UAMS.
“We have specialists who practice only in breast cancer — from radiologists and oncologists to geneticists, pathologists and behavioral health specialists,” said Ochoa. “We have team members who work closely in managing breast cancer patients and are able to provide a consensus opinion, and our patients benefit from that.”
A few days after her diagnosis, Guiden received her port for chemotherapy treatment. The first series of treatment lasted 12 weeks. In the three-week hiatus between her first and second rounds of chemotherapy, she took another cross-country bus trip. This time to Martha’s Vineyard in Massachusetts.
She began her second round of chemotherapy the day after she returned and completed it just before Thanksgiving. On Dec. 27, she had a lumpectomy, a surgery to remove the tumor, performed by Ochoa. Then she received radiation treatment for five weeks from Peacock.
Throughout her treatment regimen, Guiden says she relied on her faith, family, friends and fellow church members at St. John Missionary Baptist Church in Little Rock for support.
There was her Sunday School teacher who gave her a scripture after her diagnosis, Psalms 117:17-18, that she carried with her daily; countless prayers with her Sunday School class; her two sisters and a close friend who stopped by often to help with household chores and cooking; her son who did yard work; and her brothers who helped make sure she didn’t miss a family reunion gathering.
“I was surrounded by a wonderful group of people that supported me,” she said.
In May, one year after her diagnosis, Guiden had another mammogram performed. She was cancer free. Guiden could barely contain herself when she saw Ochoa following the exam.
“I just grabbed her and almost picked her up off the floor,” she said. “I was so happy to have the relief. There was quite a bit of anxiety prior to the mammogram because you don’t know what to expect or what will be there.”
Ochoa said Guiden’s story conveys the importance of monthly self-examinations.
“I’ll often hear patients say they don’t know what they’re feeling for, but the idea is to be familiar so something new will stand out and feel different. The monthly interval is important because it’s enough of a timeframe that you’ll notice a difference if it occurs.”
Looking back, Guiden sees that importance, too.
“It’s so important to do self-exams,” she said. “If I had done that, I would have found this sooner, but I stopped. That was the culprit, me not taking stock in myself and my well-being.”