success stories |
THE MARIE BRUDOS STORY
 July 15, 2004; Before liver and kidney transplant |
ARPKD and CHF is a disease of the kidneys and liver. A wonderful resource to learn more about ARPKD and CHF is www.arpkd.org.
At birth, we were informed of a possible kidney disease and shortly after her birth, she was transferred to a hospital in Chicago, Illinois. Marie was in neo-natal intensive care for weeks waiting to see if her lungs would develop. Each day and week that past, Marie improved and finally Marie was home with our family. Shortly after being home, Marie suffered congestive heart failure and was again hospitalized. At the time, the cardiologist wondered how Marie survived with such a damaged heart. Again, Marie prevailed and was home with her family. During the pursuing years, Marie was on many medications, including growth hormone. In her early years, she frequently had difficulty breathing and spent time in and out of the hospital. At age nine, it was determined that a Distal Splenal Renal Shunt (DSRS) could benefit Marie, to help reduce her portal hypertension and enlarged spleen - which results in low white blood cells and platelets. Unfortunately, this surgery was not successful and another surgery one week later was performed. This surgery went much better; however, the results we were hoping for never materialized. In the fall of 2003, we were informed by Marie’s doctors that she would need a liver and kidney transplant. We always expected Marie would eventually need a kidney transplant; however, the liver came to us as a big surprise.
 July 4; First transplant attempt |
We did not feel comfortable with having this major issue thrown at us without spending some time researching a liver transplant – let alone a dual organ transplant involving the liver and kidney. As Marie’s kidney functionality was decreasing, the medical team wanted to begin preparation within a couple of months. After meeting with the medical team in Chicago and understanding their plan, we felt it was imperative that we request a delay in the transplant in order to pursue second opinions.
Thanks to the wonderful world of the Internet, we spent endless hours searching medical facilities that specialized in pediatric liver transplants. During our research, we referenced the United Network for Organ Sharing (UNOS) website which has statistics on the number of transplants performed including dual transplants, which were rare. The information was helpful in finding medical centers and physicians to contact. This extensive research led us to Dr. Sukru Emre and Dr. Benjamin Shneider of Mount Sinai Medical Center.
Mount Sinai Medical Center was one of three medical centers we selected for our second opinion research. Prior to our departure to Mount Sinai, we had discussions with Dr. Emre on the phone. We were very impressed with his sincere concern for Marie and our family as well as his extensive knowledge and experience with transplants. In addition, with his busy schedule, he always made the time to personally call us back to answer our questions – not deferring us to a secretary or intern. Needless to say, we were very anxious to meet and discuss in detail our daughter’s situation with Dr. Emre and Dr. Shneider.
 July 15; After liver kidney transplant |
Upon arrival at Mount Sinai Medical Center, we found the entire staff very accommodating. In fact, the “Greeter” at the door even found a room for us to store our luggage, as we had to check out of the hotel. We initially met with Dr. Shneider who was well prepared from the data we sent about Marie prior to our arrival. He provided us with detailed information regarding his opinion on the need for a dual organ transplant. We appreciated how prepared and detailed he was regarding Marie’s liver function. He provided us with pros and cons and the long-term possibilities with or without a liver transplant. We also appreciated the fact that he was a Chicago Cubs fan and was originally from the Chicago area. This made us feel comfortable and right at home. We then had the opportunity to meet with Dr. Emre. We found Dr. Emre to be extremely patient, kind and sincere. He was very compassionate on what he felt would be the best options for Marie. He also provided a textbook with pictures and details and went over numerous questions and concerns we had. We’ll never forget the feeling after leaving the meeting with Dr. Shneider and Dr. Emre. It was a feeling of nervousness, but also relief and excitement that this team was confident in what they could do for Marie. It just felt right! We also met with Dr. Bromfield who was very informative and confident in the procedure for a dual liver/kidney transplant.
Upon returning to Chicago, we knew we had a difficult decision to make based on the second opinions and the procedure recommended by the medical team in Chicago. A meeting was set up with the medical team in Chicago to discuss the results of the second opinions. Subsequent to this meeting, we felt it was in the best interest for Marie to have the transplant surgery at Mount Sinai Medical Center in New York, under the direction of Dr. Emre. Even though this resulted in travel and possible financial complications, we knew in our hearts that this was by far, the best option for Marie. The plan Dr. Emre and his team formulated for Marie was less invasive on her current daily life and he was confident of listing Marie with a high PELD score. In addition, the pediatric patient survival rate for liver transplants at Mount Sinai Medical Center on the ustranplant.org website was truly impressive.
 Aug. 10; Ready to go home. |
Once we made this decision, it was not long before Dr. Emre and his team had Marie on the donor list. Before the transplant, Dr. Emre asked for Marie to make another trip to Mount Sinai to have a scope done to check the results from the previous DSRS surgery performed in Chicago. At the time, we again were nervous, but Dr. Emre assured us that he wanted all the facts before the transplant. Dr. Emre explained the results in detail and how this information was helpful to him prior to transplant – we went home to Chicago and waited for a donor.
On July 4th, 2004 at 1:39am, we received a call of a possible donor. At 02:00am, we received another call that we should come to New York. We made plans with the air ambulance and left Illinois at 4:45am. We landed in New Jersey at 7:45am and were at the hospital at 8:30am. Due to the holiday, there was some confusion during check-in, but all worked out fine. From 9:45am to 12:45am, it was doctor after doctor to check Marie. They were expecting the organs by 4:00pm; however, due to the holidays and other complications, 4pm came and went. Finally, around 11:30pm the organs arrived. Dr. Emre examined the organs and decided the liver was not up to his expectations, and therefore, cancel the transplant surgery. It was a long day, but we knew Dr. Emre wanted the perfect organ for Marie and only wanted to do the surgery once. Because of this, and the fact that Dr. Emre told us in the preliminary meetings that this might happen, we were not too disappointed and frustrated. Back to Chicago we went to wait for the next phone call.
We received the next call on July 14th, 2004 at 8:00pm. Again, we finished packing and jumped on the air ambulance to New York. This time, all went smooth and Marie entered surgery at 11:30am EST on July 15th. At 5:30pm, we received our first status report. Dr. Ames (kidney transplant surgeon) explained that the liver transplant is going very well. Marie needed very little blood products and Dr. Emre had just finished the most difficult part of the liver surgery. Dr. Emre finished the liver transplant at 9:30pm (10 hrs). Dr. Ames started the kidney transplant at 9:30pm and finished at 11:30pm. It was decided to keep Marie’s kidneys in place, so Marie now has a new liver and 3 kidneys. Marie was taken to the Pediatric Intensive Care Unit (PICU) at 12:15am. We were able to see Marie at 1:15am. Marie was able to recognize us and wiggle her fingers.
The next few days were simply amazing. We still can’t comprehend how someone with 12 hours of surgery and 2 new organs could be out of the hospital in 10 days! On July 17th, Marie was taken off the ventilator and her kidney functionality was that of a normal person (creatine level was .8). On Sunday, July 18th, Marie was sitting up and moving around. On Monday, July 19th, Marie was sitting up in bed and logged into the Internet on a laptop computer, provided by the hospital for patients to use. On Tuesday, July 20th, Marie was moved out of the PICU – all the nurses clapped with joy as they wheeled her away. The doctors and nurses during Marie’s post transplant were all fantastic caring people. They had given her the nicknames Superstar and Sunshine during her stay in the PICU. On July 21st, Marie was walking in the hallways and beginning to eat cafeteria food. On Saturday, July 24th, Marie was discharged from the hospital to the Transplant Living Center (TLC). The TLC is a wonderful place for transplant patients. We met many wonderful people there, the accommodations are very nice – and it is very reasonably priced for Manhattan. On Tuesday, August 10th, Marie was cleared to fly home to Chicago.
Today, Marie is an energetic 12-year-old 7th grader, playing volleyball, basketball, softball and soccer. She is optimistic and keeps our family smiling and joyful.
We cannot say enough wonderful things about our experience with Dr. Emre, his staff, all the doctors, and all the nurses at Mount Sinai Medical Center. As Marie was being discharged from the hospital to the TLC, we noticed the following saying hanging on the wall, which we felt was descriptive of the people we met at Mount Sinai Medical Center:
100 years from now...
It will not matter what
my bank account was, the sort
of house I lived in, or the
kind of car I drove, but the
world may be different because
I was important in the life
of a child.
One thing we’ve learned over the years is that everyone has his or her own unique situation. We always keep this in perspective and realize feeling sorry for yourself is of no benefit – someone always has it worse than you. Mount Sinai Medical Center and Dr. Emre and his staff really made a stressful time in our lives much easier.
We are deeply grateful for everything Dr. Emre and Mount Sinai Medical Center has done for Marie and us, and will always know in our heart that we made the right decision for Marie – with no regrets. It is impossible to put into words our feeling of appreciation. We would highly recommend the Transplant Team and Pediatric Care at Mount Sinai Medical Center to other families.
Sincerely,
Phil and Lisa Brudos
