Two sisters, three kidneys, and 2,500 miles

Two sisters, three kidneys, and 2,500 miles
Life saving surgery for a local woman

By JAMIE POTE
Published: Sunday, May 16, 2010 1:11 AM EDT
TEWKSBURY - Nearly 2,500 miles, six operations, three different hospitals, three helicopters and now two local sisters are now resting comfortably after receiving an early Mother’s Day Gift that will stay with them for the rest of their lives. On April 29, local sisters, Janet Bower Rose of Tewksbury, and Patty Bower Rooney of Billerica, were two of six people from three different cities to undergo kidney transplant surgery. As a result, the lives of three people in need of healthy kidneys have been improved and prolonged.

It’s incredible to think about what exactly transpired on that Thursday morning. Rose’s kidney was flown to St. Louis via a commercial flight out of Logan Airport. Then another person’s kidney was flown from St. Louis to Baltimore, and a third one came in from Baltimore to Boston. That last one was surgically implanted into Rooney’s body. All six surgeries were a complete success, and the scenario was scripted like a Hollywood movie.

“It was like that scene out of that movie ‘Rat Race,’” said Rose with a big laugh. “They were on the airplane with a heart placed in an igloo and it was right next to the pilot in the cockpit. In the movie, the heart went out the window. Luckily that didn’t happen to us - you tried not to think about something like that happening.”

And it didn’t. Rose’s surgery started at 7:30 a.m. at Brigham and Women’s Hospital in Boston. Her kidney was removed, and was transported 1,200 miles to St. Louis. In St. Louis, another person’s kidney was transported 875 miles to Baltimore, where yet another person’s kidney was transported 400 miles to benefit Rose’s only sister, Patty Bower Rooney. The surgery to implant Rooney’s new kidney began at 1:30 p.m. and lasted well into the early evening. Her surgery, as a matter of fact, took longer than the others. Her doctors did not remove one of her kidneys; rather they disconnected one of her existing kidneys and transplanted the new one directly below it.

Now, 14 days later, both Rose and Rooney are feeling terrific on their road back to recovery, and the thought of that crazy day and how many people were involved - doctors, nurses, pilots, and even the people who packed the igloos with ice, or family members who were on hand in the waiting room for hours, hoping everyone came out of the six surgeries completely healthy with no complications – is overwhelming.

“To me that’s the most amazing part of it all,” said Rose. “I was curious and I went on ‘Mapquest’ trying to figure it all out and it’s nearly 2,500 miles between the three cities. And for three kidneys to be transported like that to three cities is just really mind-boggling. And that day was really windy, so I’m glad I was out of it and didn’t know about anything crazy that could have gone on.”

Patty and Janet are the daughters of Antoinette Rose Metallo Bower, who passed away from polycystic kidney disease when the girls were ten and six years old respectively. Antoinette was the last of five siblings, who all died from the same disease.

“Our mother was only 39 years old when she passed away,” said Rose. “Since it was before the days of dialysis, the doctors tried to compensate for her failed kidneys by giving her transfusions, but eventually this was no longer working. It was difficult to comprehend how our lives would change at that point. Back in those days, the men worked and the women were homemakers. Our Dad had to learn how to cook and run a household, but with the help of a neighbor, his two sisters, and some hired help, he was soon able to take over those duties as well. He was a truly amazing dad. He filled the part of ‘mother’ and ‘father’ better than most people would have been able to, and made sure that we never missed out on a single opportunity.”

One opportunity was seeing his two daughters contract the same disease that took his wife’s life away much too soon.

“After our mother passed away, our Dad brought us to Boston for testing since this disease is hereditary and it is a dominate trait,” explained Rose. “Although we both tested negative at the time, what the doctors didn’t realize at that point was that we were too young for the disease to be detected. After my sister had her daughter Jen in 1981, she was giving her medical history to her care providers and they questioned the history of polycystic kidney disease in our family. They advised her to be tested again since she was 29 at the time and that was when she discovered that she did have the disease as well. I was doing my internship in Cincinnati at the time and she called me to say that I needed to go in and be tested again. I was 25 at the time and was very fortunate that I did not have the disease. I was tested two or three more times over the next few years to be sure, but each time the ultrasounds were negative.”

Ever since she was diagnosed with the disease when she was 29, Patty knew that eventually she was going to need the transplant. In 2007, that time came. Her husband was tested and was a match, but wasn’t accepted as a candidate later on because of hypertension.

“The day that I found out that she needed a donor, I told her that I wanted to donate for her,” said Rose. “In April of 2008, I called the transplant co-ordinator at Brigham’s Hospital and informed her that I was interested in undergoing the testing to see if I could be a donor for Patty. It took close to six months of medical testing, meetings with specialists, psychologists, social workers, and finally it was determined that I could donate. The only problem was that since we had different blood types we were not a match, and therefore her body would not accept my kidney. In our case, we would become ‘shared partners’ and they entered us into the NEPKE (New England Program for Kidney Exchange) system. This is a transplant option for patients with an incompatible living donor. We were entered into the system in December of 2008. Our first match came through last June, and we were very excited.”

But from June of 2008 until several months ago, two different attempts were cancelled due to one reason or another. The second cancellation came last October.

“Testing continued all last summer and finally in September, we had a surgery date of October 28th,” said Rose. “Everything was going along smoothly until we got a call a few weeks before the surgery date to inform us that my recipient had to have another surgical procedure and therefore would require a six week recovery period. Surgery was called off and we had to go back into a waiting period.”

Over the next four months, no one knew the status, and throughout that time Rooney felt her health deteriorating.

“I was still able to go to work, but I was tired and always short of breath,” she said. “To ride the bike was difficult and everything just seemed to be getting much harder to do. I knew that starting dialysis was an option, but obviously surgery was a much better option than being hooked up to a machine three or four times a week.”

But then a phone call on March 24 changed all of that.

“Just two weeks after the cancellation of our second surgery attempt, we received another call that a new match had been identified,” said Rose. “Third time was the charm, since this was the match that led to our eventual surgeries. This time things moved much quicker. Again it was a three-way match, but this time the destinations were Barnes Jewish Hospital in St. Louis, Missouri; Johns Hopkins Hospital in Baltimore, Maryland; and Brigham and Womens’ Hospital in Boston. We were once again cautiously optimistic. From the previous two cancellations, we knew that nothing was guaranteed, but we hoped that this would be the one.”

And it was.

“At that point, all you could do was put your faith in God and with the doctors and say ‘let’s go’ because if you did anything else, you would drive yourself crazy,” said Rooney.

Rose was brought into the hospital at 5:30 a.m. on April 29.

“I got out of surgery around 12:30 and I woke up in the recovery room,” she said. “I was very groggy but I remember seeing my sister being wheeled by me.”

Rooney was being moved to the operating room at that point, and went under a nearly six-hour surgery to receive her knew kidney. To this day she doesn’t know who it came from.

“I was told afterwards that all six surgeries were a success,” said Janet. “We have asked about the possibility of finding out who the other people involved are, and from my understanding if all six are in agreement, we could possibly send an email and a photo and contact each other that way. I think that will be really nice if we can establish that contact.”

Until then it’s all about recovery. Rose is a registered dietitian and works as a Director of Nutrition at the Associated Early Care and Education in Boston. She is the proud mother of two children, Kaitlyn, 21, who was an outstanding cross country and track athlete at TMHS who went onto UNH, and Nick, 18, who is a senior two-sport athlete excelling in ice hockey and lacrosse.

Rooney is the proud mother of two daughters, Jen, 28 and Becca, 23, and she is the director of the Nurturing Nest PreSchool in Burlington and also works as a diet technician at Children’s Hospital in Boston.

“I was told that it would be a two- to three-month recovery period and that works out perfectly with my work schedule having the summer off,” said Rooney. “But it’s been 11 days since the surgery and I feel pretty good. I have a little bit of pain, and the stitches and staples are still there, but I’m feeling much better than before.”

And that’s all thanks to her younger sister and four complete strangers.

“Once my sister told me she wanted to donate, I never questioned anything else,” said Rooney. “There was really nothing to talk about after that. We had complete trust that we were doing this in the best possible place and we were in good hands. If you’re going to do something like this, you have it done at Brigham and Women’s Hospital - they really know what they are doing.”

http://homenewshere.com/articles/2010/05/19/tewksbury_town_crier/news/doc4bec1bbe351b0614338800.txt