Carmen Munoz, right, with donor Pam Davison
When Carmen Munoz began her search for a kidney transplant center, finding a place with expertise in polycystic kidney disease (PKD) played a major role in her decision to choose the University of Maryland Medical Center (UMMC). Carmen, of Texas, had been waiting two years for a kidney transplant. She suffered from polycystic kidney disease, an incurable condition which has affected five generations of her family.
Carmen, whose grandmother, father, daughter, and grandson have all been diagnosed with PKD, was not diagnosed until she was 42. But she didn’t have symptoms until two years ago when she turned 60. At that time, her doctor placed her name on the UNOS list. Her kidney function was at 20 percent. By the time she had her transplant at UMMC, Carmen was in severe kidney failure, with only 12 percent kidney function between the two kidneys.
Carmen was listed at nine hospitals but she says she choose UMMC not only because of the superior medical care, but also because of her friend, Jamie Cadiz, another PKD patient who had also undergone a kidney transplant at University of Maryland in 2006, and Jamie’s mother Carolyn Morris.
One day at a North Texas PKD Chapter meeting, Jamie and Carolyn introduced information about Jamie’s transplant team at UMMC. After the chapter meeting Carmen walked up to Jamie and Carolyn to inquire further about Jamie’s experiences at UMMC. Since that meeting Carmen, Jamie, and Carolyn have become good friends and continue to stay in contact networking with one another today. (Read Jamie’s success story)
Countless hours of Internet research also led Carmen to conclude that the best facility for her transplant was the University of Maryland.
“I started comparing statistics on successful surgeries, and transplants conducted at hospitals in the U.S. Time was spent researching hospitals, surgeons, nurse coordinators, patient care, transplant centers, transplant survival rates, and the hospital’s geographic locality,” said Carmen. “I compared all of these figures and statistics, concentrating on hospitals that performed the most PKD transplants. Of course Maryland popped up. What also caught my attention was that Dr. Andrew Kramer [a UMMC urological surgeon and an assistant professor of surgery at the University of Maryland School of Medicine] was a leading specialist in PKD kidney removal. That was a huge factor.”
She said the other huge factor was organ transplant surgeon Dr. Eugene Schweitzer, who is also a professor of surgery at the University of Maryland School of Medicine. “I was very impressed with his specialties in transplantation and clinical studies,” Carmen said.
After processing all this new information Carmen’s next step, from Texas, was to contact UMMC about having her procedure in Baltimore. She was told yes.
“From that moment on, I was encouraged with my outlook on life because a direction had surfaced for me but most of all my hard work paid off because I now had a kidney transplant team of MY choice,” she said.
Carmen liked the fact that UMMC removed the diseased kidneys in PKD patients and performed a transplant at the same time, whereas the other hospitals she consulted with would not remove the old kidneys. But at UMMC, surgeons offer a combined simultaneous bilateral nephrectomy/transplant. A simultaneous bilateral transplant is when the kidneys are removed and then a kidney transplant is performed in the same operation. In Carmen’s case, her kidneys were removed first and then she received a living donor kidney in the same operation.
Searching for a Donor
Before deciding on UMMC, Carmen was listed at nine hospitals. But time was running out for Carmen who was down to 15 percent kidney function. She still needed to find a donor.
She circulated flyers, and wore signs asking for help. “I ran the gamut to try to find some help,” she said. Finally, in September of 2007, as a last resort, she found a web site called matchingdonors.com.“I was desperate and reached out for help anyway I could. I was fearful that I would have to go on dialysis. Matchingdonors.com helped improve those odds for me and others by finding living altruistic donors for patients needing transplants,” Carmen said.
Matchingdonors.com is a Web site for people who need organs and people who want to donate. Through the Web site recipients create a profile of themselves which allows the potential donor and recipient to correspond directly with one another. The non -profit organization charges a fee, but also offers patients and donors help with transplant related expenses not covered by insurance such as a lower cost fees for those who can’t afford the fees, transportation coverage, etc.
That’s how her donor, Pam Davison found her. Pam, who’s also from Texas (San Antonio) first found an article in a magazine about the matchingdonors.com web site. She decided she wanted to be a kidney donor.
“Carmen was the first one I contacted. I read her profile and said that’s the one. I was drawn to her. I called her up that night and said I have a kidney if you still need one. Those were my exact words,” recalled Pam. “Not long after that Carmen sent me the donor application to complete and mailed it to UMMC. A telephone conversation with the living donor transplant coordinator followed. Then a lab kit was mailed over night to me. Carmen and I scheduled a day to have our blood tested. Within four weeks, UMMC informed me that we were a match. I immediately called Carmen with the good news and the transplant process began. Meeting for the first time was our next step,” said Pam.
Pam had already been listed as an organ donor, but preferred to be a living kidney donor. “My mother was a home health nurse and I’ve seen people on dialysis. I’ve always been a donor, like when I die, and I know one can donate to family members. I never knew you could donate to a stranger or how to go about doing that. When I read the article about matching donors.com I thought, why wait till you die to help someone?” Pam said.
Carmen and Pam continued their correspondence by telephone and e-mails. On July 15, 2008, Pam had a layover in Dallas. She was on her way to Baltimore for her first phase of testing, and it was then for the very first time that they met face to face.
After receiving the good news from Pam that she had been approved, Carmen applied for financial assistance offered by the National Living Donor Assistance Center (NLDAC). Carmen contacted Nina Schroder, a UMMC social worker, for her assistance with the application process. Nina submitted Carmen’s application to NLDAC, which they approved.
That same day, UMMC contacted Pam to set a date for the transplant. October 8, 2008 was the chosen date. Needless to say, “Pam and I were so excited. We were both giddy. I don’t know who was more excited Pam or I. The scheduled date for the transplant couldn’t come soon enough,” said Carmen.
Surgery and the Aftermath
On October 8, 2008, Carmen had her transplant surgery. She was able to leave the hospital in about a week.
“Carmen has done exceptionally well and her quality of life has really improved,” said Dr. Kramer, who performed the surgery with Dr. Schweitzer. “She went into the experience positive, excited, and upbeat. By removing the kidneys at the same time as performing the transplant, versus several weeks or months before, she did not need a dialysis "bridge" prior to surgery. Second, she was always concerned about those huge kidneys remaining in her body after transplant. Now she feels she will not need any more surgeries. The PKD is a thing of the past for her.”
And Carmen says she feels positive after the surgery.
“My attitude is great!! I had such trust in both doctors and in their knowledge and skills. I couldn’t be happier with them and the results,” Carmen said. “Doubts never entered my mind and I never experienced any fear. I could not be happier or more thrilled!! As far as I’m concerned, they are at the top of their field and deeply grateful they allowed me to be their patient.”
Pam also had a very quick recovery from her surgery. She was in the hospital for one day (overnight), and was released the next day. She went back to work two weeks after the surgery.
“I’m doing great. I healed so fast. It’s amazing,” Pam said. It was the easiest surgery I ever had. It was a quick and easy recovery. I was pleasantly shocked that it was not painful at all.”
Pam says she always felt confident about the surgery and her transplant team. "I never felt hesitant or worried about me or the surgery. I knew I was in the best of hands."
A Silent Bond
Now, after the operation, Pam is very pleased with Carmen’s progress.
“I’m so grateful that Carmen is doing wonderfully,” says Pam. I’m so glad she will be able to live her life and have fun and enjoy her grandchildren and start living. “
“We talk often. We are good friends. I think there is a closeness between she and I that no one can match,” Pam said. “I think it’s like a silent bond. She is always in my prayers. We talk all the time. She’s family now.”
By Michelle W. Murray
For more information on the any of the programs or services of the Division of Transplantation, please call 410-328-5408 or 1-800-492-5538. If you've received a transplant at the University of Maryland Medical Center and would like to share your story, please e-mail us or call 410-328-7660.