Adult stem cells offer a chance for health, a second chance for life
By Marty Denzer
Catholic Key Reporter
BASEHOR, Kan. — Courage can be quiet and steadfast. Like the Wizard of Oz reminded the Cowardly Lion when he presented him with the Legion of Courage medal, “… You don’t need a medal to show you have courage.” Missy Lucero, 30, has quietly, courageously battled pulmonary hypertension since birth.
Marty Denzer/Key photo
Missy Lucero hugs here godson, Angel. She hopes that her adult stem cell treatment is successful so she can raise him to adulthood.
At first glance, pulmonary hypertension doesn’t sound too terrible; lots of people have high blood pressure. However, when hypertension affects the blood vessels of the lungs, it can go from bad to worse rapidly. The disease acts rather like a kinked garden hose, increasing pressure and back up. It involves three processes: Vasoconstriction, a narrowing of the blood vessels; scarring of the blood vessels causing thickening and stiffening which narrows them further and may lead to complete blockage, and thrombosis or clotting.
It becomes progressively more difficult for blood to get through to the lungs. As a result, the right side of the heart is forced to pump harder to force blood through; the stress enlarges the heart and makes it less flexible. Less blood flows through the lungs and on to the rest of the body. Patients become tired, light headed and short of breath at the slightest exertion. There is no known cure, yet.
Clinical trials at the Mayo Clinic in Florida have seen successes in reversing and curing pulmonary hypertension using adult stem cells from patients’ own blood.
Missy was born in Colorado Springs, but shortly after, tests on the infant indicated Primary Pulmonary Hypertension and Turner Syndrome. Her family soon moved to Albuquerque, N.M., to be near her paternal grandparents. When Missy was nearly 3 years old, doctors determined that her PAH needed to be ligated — tied up to prevent bleeding — and the child underwent open heart surgery through her back at UCLA’s hospital a few months later. The surgery was successful and Missy was able to lead a more normal childhood, despite needing to be on oxygen for another decade.
Sports, as a rule, were out, but she devised compromises that enabled her to participate to some extent. “Missy would kick a ball, and a teammate would run the bases,” her mother, Liz, recalled.
Higher elevations had a negative effect on her and so, at her doctors’ recommendations, the Lucero family moved out of the highlands of New Mexico to flat Oklahoma and then to Kansas City by the time Missy was 8.
In 1999, at age 20, she had been stable long enough that she felt able to attend school full time. She enrolled in college in DeKalb, Ill., with an education degree in mind. It wasn’t long before she began experiencing fatigue, shortness of breath and chest pains which she attributed to a normal college routine: over work and under sleep.
She returned to Kansas City in 2002, suffering from internal bleeding and seriously high pressure levels. In her absence, her parents Liz and Rick had researched area hospitals to find one specializing in pulmonary hypertension. At the time, the closest treatment program was at Barnes Jewish Hospital in St. Louis. The Luceros rushed their daughter to St. Louis, where she was placed on a double (heart and lung) transplant waiting list. During the waiting period, Missy was prescribed Flolan, a synthetic form of a naturally occurring molecule, prostaglandin, which helps dilate blood vessels in the body.
It took Missy almost a year to get used to the Flolan, for her body and mind to get accustomed to the daily pump changes and the drug’s side effects, including blotchy flushing on her face, arms and torso. Flolan is infused directly into the bloodstream through a surgically implanted catheter by a portable, battery-operated pump that she carries in a protective waist pack.
The drug lasts only 3-5 minutes and must be slowly, continuously pumped into her body through the permanent catheter placed in a vein in her chest. The pump is filled daily with the mixed Flolan solution. Liz mixes the solution every night and refrigerates it, ready for Missy to load in the pump each morning. Interruption of Flolan can be life-threatening, even a brief interruption can result in a sudden reoccurrence of symptoms.
For five years, the drug did its job, buying her time. Missy’s status on the transplant list was changed to inactive. But her doctors warned her that there was a limit to Flolan’s effectiveness; the drug’s potency waned after 5 years, and lost its effectiveness after 7 years, even with increased doses.
Doctors at Barnes Hospital continued to monitor the young woman, who was helping develop an educational association and Web site devoted to pulmonary hypertension, substitute- teaching for the School of Religion at St. Andrew the Apostle Church in Gladstone, keeping an eye on her sister Vanessa, and making a cursillo.
She was also keenly interested in her godson, Angel, a child with special needs. The boy, who is autistic, had been abused and Missy was eager to take over his upbringing.
“I had done para-professional work while in college,” she said, “working with special needs children. I knew that I could help Angel, and I wanted to get busy.”
She volunteered for clinical trials on therapies for pulmonary hypertension. “I figured that if they didn’t help me, they might help someone else,” she said with a shrug.
In late November 2006, the Lucero family knew Missy had become seriously ill again.
“We ate Thanksgiving dinner and left for St. Louis,” Missy said.
The diagnosis was daunting: her aortic valve was shot. She was given several options: Go back on the active transplant waiting list, increase the Flolan dosage, or undergo surgery for an aortic valve replacement.
She discussed it with her parents and extended family. “My parents have always been my feet and my mouth,” she said. “But decisions about me have always been mine. At that point, I decided a transplant would be a last resort. I opted to prolong my life, to go with the aortic valve replacement. Pulmonary hypertension wears the heart out. And, actually, scar tissue on my heart caused by trauma and all the procedures I had had over the years did not make me a good candidate for a transplant.
“That was when I first heard about adult stem cell therapy for PAH, but the therapies were still so new and I was so focused on making the decision to wait for a transplant or have the valve replacement that I paid little attention. After the surgery, my meds were increased, and that really hurt. But I got used to it.”
Her doctors and family expected her to be bed-ridden and on life support for at least a week while her body adjusted to the new aortic valve. “My father slept on the floor for three days while I was in the hospital,” Missy said.
But Missy surprised them all by going off life support and taking her first steps in the hallway outside her room in the Intensive Care Unit within 48 hours.
Missy downplayed it all. “My sister was about to give birth to my twin nephews and I wanted to be up and about.”
She was returned to the active transplant list and the Flolan dosage increased. It’s been two years and the potency of the drug is lessening. A recent visit to her doctors in St. Louis showed her pulmonary pressure had increased to the critical stage. “Right now,” Missy said, “my pressure is about 117. Most people are around 30 or so.”
A few months ago the Luceros began seriously investigating therapies using adult stem cells. “If God wanted embryonic stem cells to work to cure diseases, he’d have made them work by now,” Liz said. “Since they don’t seem to be working, God must not want them to work. But adult stem cells do work and there’s so much they can do.”
Placing both feet on the ground Missy said, “I believe in life and I believe using my own stem cells will bring about a cure.”
Benedictine Sister Mary Teresa Morris, who works for the home health agency Liz Lucero runs, came upon a possible solution while researching adult stem cell trials. Doctor Zannos Grekos, an associate of the Mayo Clinic in Jacksonville, Fla., and head of an international team that developed adult stem cell treatment protocol at Nova Southeastern University in Fort Lauderdale where he serves as assistant clinical professor of cardiology, has had remarkable success in the treatment of pulmonary hypertension.
Working with doctors in Israel and the Dominican Republic, Grekos was able to harness the “regenerative power of (adult) stem cells to replace damaged blood vessels in the lungs” of PAH patients, and in several cases seeing complete cures.
The Luceros have been in contact with Grekos and Liz was assured that “the procedure should work and Missy’s acceptance into the treatment program was not an issue.” But cost is an issue.
Missy counted on her fingers to emphasize the timetable. She travels to Jacksonville and checks into the Mayo Clinic where on a Tuesday Grekos will draw 250 ccs of blood, to be immediately couriered to Tel Aviv. A team of physicians with TheraVitae, an Israeli biotechnology company, then isolate and prepare the stem cells, a process which takes about a week. The prepared stem cells are flown to the Dominican Republic’s division of Florida-based Regenocyte Therapeutic, an adult stem cell clinic. The procedure will take place at the clinic in the Dominican Republic, since it has not yet received FDA approval and so cannot be performed in the United States.
Clinic physicians will inject the good cells into the damaged areas of Missy’s heart and lungs. The follow-up will be conducted at the Mayo Clinic in Jacksonville. The consultation, examination and blood work performed at the Mayo Clinic as well as the follow-up visits will be billed to her insurance company. But the procedure and other work done outside the U.S. will not be covered.
Several fundraisers are scheduled to help the Lucero family raise the $65,000 to cover the costs, including a spaghetti dinner at St. Therese Parish in Parkville, where the Luceros are longtime parishioners.
Liz said, “Our goal is to get Missy to Florida.”
And what does Missy hope to do should the procedure be successful? “I want to be a grade school teacher.”
Liz chuckled and said, “She wants to catch while them they’re young.”
Missy shook her head rapidly. “No, I just want them shorter than me! I’m all of 5’1”.”
She wants to write a book. Teach a GED class, and travel to Albuquerque to spend at least a month with her grandparents. She wants to see Angel, whom she has gained custody of, and her nephews grow up.
She wants to be an advocate for pulmonary hypertension or anyone struggling with a disease. She has distanced herself from the Web site that she helped create because too many of the people she worked with on the project have died. The site and educational association have come under the umbrella of KU Medical Center’s new pulmonary hypertension department.
A strong Catholic faith has kept Missy going. She would like to meet Mother Angelica Rizzo, founder of the Eternal Word Television Network.
Mostly Missy wants to live an everyday life, not always tied to medicines and clocks.