When she thought she had nowhere left to turn, Jamie Cadiz found help at the Medical Center
After struggling with the effects of polycystic kidney disease (PKD) for over 10 years, Jamie Cadiz faced a difficult choice -- dialysis or transplantation. She was in end-stage renal failure and needed a kidney transplant but she also faced an additional challenge -- finding a transplant center that would take her case, and who would also remove her diseased kidneys at the same time of the transplant. She finally found that place: the University of Maryland Medical Center.
“They shopped around for a long time to find a place to accept her case -- some refused transplant at all, everyone else refused to do the combined nephrectomy/transplant based on risk,” said Dr. Andrew Kramer, a urological surgeon at the University of Maryland Medical Center and an assistant professor of surgery at the University of Maryland School of Medicine.
Now Cadiz, a 47-year-old woman from Dallas, Texas, is recovering well after undergoing the removal of two cyst-filled kidneys, each weighing 9.5 pounds, and immediately receiving a living-donor kidney transplant at the University of Maryland Medical Center. Her diseased kidneys were 13 times the normal weight and twice the normal length. A normal kidney weighs approximately 11 ounces.
Cadiz’s surgery, on July 20th, was performed by a multidisciplinary surgical team with clearly defined roles and expertise. Dr. Kramer performed the bilateral nephrectomy, Dr. Eugene J. Schweitzer, director of kidney transplantation at the medical center and a professor of surgery at the UM School of Medicine performed the kidney transplant surgery.
Dr. Kramer says that team approach was important to the success of the surgery.
“The surgery showcases the services offered at the University of Maryland -- an experienced team of surgeons working together, starting from the donor surgery team, the urology team and the transplant team to the plastic surgery team. That team approach is what makes us unique.”
Jamie's Struggle with PKD
Cadiz was first diagnosed with polycystic kidney disease (PKD) at age 33, when she was pregnant. Her father and grandmother died from the disease, and her aunt also has it.
PKD is a genetic disorder in which numerous fluid-filled cysts slowly replace much of the mass of the kidneys, reducing kidney function and leading to kidney failure. It affects more than 600,000 Americans and an estimated 12.5 million people worldwide. In fact, PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia combined. It is the fourth leading cause of kidney failure. There is no cure for the form of PKD Cadiz has, known as autosomal dominant PKD.
Because of the PKD, Jamie did have some problems during her pregnancy, including preeclampsia and swelling.
After the pregnancy her symptoms gradually worsened. She went into hypertensive process right after her son was born. “I recovered but my kidneys never really went down. I continued to look pregnant from that time forward,” she said. “I developed a lot of kidney cysts during my pregnancy. Afterwards, they continued to get really big.” Due to the increasing abdominal distension, Cadiz says she looked like she was perpetually 12 months pregnant.
From 1992 until 2005, Cadiz’s condition kept getting progressively worse and her kidney function went to 60 percent. She had an internist watching her, who was trying to keep her hypertension under control by treating her with diuretics. But her condition continued to deteriorate until she developed end-stage renal disease in August 2005. Then her nephrologist recommended a transplant. While the search for a donor began, her condition became worse. She began dialysis in March 2006.
When she visited a transplant center in her state, however, they didn’t want to do the transplant right away. They wanted to remove her kidneys and put her on dialysis before they would consider her for a transplant — something Jamie did not want to do.
Finally, in December, the center agreed to approve Jamie for a transplant, but then she faced another hurdle. Because she had been pregnant and had received a blood transfusion, tests indicated that she had developed very high panel reactive antibody (PRA) screening score — meaning that her body made antibodies against 91 percent of potential kidney donors, leaving only 9 percent of the population from which her body would accept a transplanted kidney.
As Jamie’s mother, Carolyn Morris remembers: “They told us that she had a high PRA and said the likelihood of her finding someone to give her a kidney would be very low, and she should probably just have to be content with being on dialysis for the rest of her life.”
That transplant center did not work with high PRA patients, but the transplant coordinator gave Jamie and her family names of six centers that would. Jamie and her mother choose two to visit, one of which was the University of Maryland.
The level of expertise of the University of Maryland transplant team was one of the reasons they choose to come here. But Jesse Cadiz, Jamie’s husband, says there were other reasons.
“The doctors in Maryland were more people oriented,” said Jesse. “They talked to Jamie on a person-to-person level instead of doctor to a patient and Jamie liked that and that’s why she wanted to come to University of Maryland.”
Interestingly, when Jamie researched transplant doctors, two separate medical institutions recommended Dr. Schweitzer. “I was interested to find out that Dr. Schweitzer has a big name [in this field]. When I called another hospital for advice since they didn’t take my insurance, they told me to find Dr. Eugene Schweitzer and follow him,” Jamie recalled. “He’s been great. It’s good to know you’ve got the best.”
Finding a Donor
Jamie with kidney donor Scott Clarke
While the search for a potential donor began, Cadiz’s condition worsened. She began losing weight even as the kidneys grew larger and heavier. She wasn’t eating much because the kidneys pressed against her stomach, leaving her little room for food.
Finally, she found a donor who lives close to her home in Southlake, Texas. Jamie’s husband Jesse, said that in itself was a success story. “It’s a success story because of Jamie’s high PRA. Statistically she only had about a 9 percent chance to find a cadaver donor or a living donor, and guess what? We found one. And he lives only 15 minutes from where we are.”
The donor, Scott Clarke, came from Southlake Blvd. Church in Southlake, Texas.
“This particular church in our town said they would like to help and asked if it would be okay with me if they made an announcement to the congregation. My mom went there and explained why we were in such need of donors,” Jamie recalled. “The people at the church are extremely giving and open. The took applications from a lot of people.”
The church took the first six people and started testing them. Out of those six, three of them were from the church and those three people matched. Then the first two were eliminated for different reasons and Scott was the third one. He was accepted and was willing to go to Maryland for the surgery.
Jamie says she was impressed by Scott’s generosity and willingness to help. “I have a lot of respect and love for him. His generosity is just amazing to me,” said Jamie. “He’s an amazing person and his wife is equally amazing, she supported him the whole time.”
Both Jamie and her husband were impressed with the experience of the doctors and the care they received at the University of Maryland.
“I think it’s very top- notch, first class,” said Jesse Cadiz. “They are very knowledgeable because they took a high-risk patient like Jamie with a high PRA. And they were willing to do a nephrectomy at the same time as the kidney transplant. Most kidney transplant institutes will not do that. But they did it at University of Maryland.”
As far as Jamie is concerned, “It’s been terrific care. The doctors and the nurses have been absolutely fabulous.”
She was especially impressed with the care she received in the PACU (Post Anesthesia Care Unit). “It’s incredible to me. I’ve had lots of surgeries and I’ve never had that type of recovery-room care. And on the transplant unit, we had a nurse and a technician who worked 12 hours a day and every single one of them was absolutely fabulous. So it’s been great care.”
In addition to the doctors and nurses, Jamie had positive comments about the medical students she encountered at the Medical Center. “It was my first time at a teaching hospital so often the students came in, and they asked questions. I’ve been very impressed with all that I’ve seen,” she said. “We had a particular medical student Geoffrey Roelant, (a 3rd-year medical student who was on rotation in the Transplant Unit) who followed me and took a special interest. He checked on me a lot and I really enjoyed seeing him. He was wonderful.”
Carolyn Morris is also grateful for the care her daughter received. "Jamie's physicians were outstanding and the University of Maryland is an excellent hospital. Our family is so thankful we chose the best," she said.
Now that Jamie has the transplanted kidney, new cysts will not grow on that kidney because it has a different DNA structure. She still has PKD, and her liver may continue to grow cysts but that shouldn’t pose a problem since the liver regenerates the damaged areas.
“There shouldn’t be any more major health problems, because I was healthy in the first place except for my kidneys,” she said.
And now that she has her new kidney, Cadiz says, “I have more energy and more memory. I feel much more together and alert. I can look forward to recovery at this point. Before the transplant, I didn’t have much of a life to look forward to. Now I have a new outlook on life and it is very positive.”
For more information on polycystic kidney disease, visit the PKD Foundation Web site at www.pkdcure.org
By Michelle W. Murray