THE STORY OF US
We should call ourselves lucky if we come to know a person in our lives that has enough personality to fill up the room, that has such abundant compassion that they readily share it with others and possesses a devotion to family and friends that is beyond measure. Hearts for Russ was started in an attempt to make sure Russ’ memory never faded, although once you’ve met him, he is impossible to forget. Russ was born in the summer of 1968 on Long Island, NY as a blue baby. His parents Joyce and Russ were told he would not make it and had him baptized immediately. Russ was born with Transposition of the Great Vessels which meant his heart functioned backwards. The oxygen-poor ("blue") blood returning from the body and coursing through the right atrium and right ventricle is pumped out to the aorta and to the body, while the oxygen-rich ("red") blood returning from the lungs and coursing through the left atrium and ventricle is sent back to the lungs via the pulmonary artery. Russ also had an atrial septal defect (ASD) which is a hole in the wall (septum) between the two upper chambers of the heart. This caused great stress on his body and would eventually lead to congestive heart failure. As he was born when medical technology was still researching things that are secondhand nature today, there was no data to support what his life would look like. Russ went through life fairly normal up until the age of 10 when he had a heart attack while playing at a friend’s house. Parents Joyce and Russ were at a loss as there was no such things as pediatric pacemakers in 1977. Russ was transported to the University of Alabama Hospital where medical breakthroughs were being discovered every day. Russ became the second child in the world to receive a pediatric pacemaker. During this time Russ was blessed to be able to enjoy his life andmet his wife and forever partner, Pam Cruickshanks. They started dating in 1986 right before Russ left for college at SUNY Delhi and by 1992, they were married. The week before their wedding Russ had a hiccup and had a stroke but was overall healthy. Russ and Pam together had 2 children, Carollynn (now 20) and Cydney (now 15). For 35 years, from 1977 to 2012, besides pacemaker replacements, Russ' health was outstanding until he began congestive heart failure. During this time Russ became a master at woodworking, worked as an electrician but due to his heart condition switched and found his true passion in sales. He sold everything from water filtration products, web services in the burgeoning days of the internet, environmental remediation or the small businesses of the people he came to befriend through business networking groups. Russ was a great salesman and absolutely thrived when interacting with people. The profession fit his personality like a glove.
In 2012 Russ had begun with shortness of breath and began water pills to help with water retention. In November 2012, with the hope it would support Russ' heart better, his pacemaker needed to be replaced with a much smaller, more powerful defibrillator. During this time, Russ and Pam for the first time were hearing it was possible for Russ to receive a heart transplant. By January 2013 Russ’ heart was giving up and became a known fact he would need a transplant in the coming months. Russ was placed on the list and in the coming days needed to receive an L-VAD (left ventricular assist device) to help his heart in the meantime. There is extreme irony in someone who will give you everything they have, the nicest person you have ever met, the "light in the room" having a broken heart. Nevertheless, Russ had surgery and his condition began to decline further. He came home from the hospital for about a month before he was in the hospital again in the end of March. The LVAD could no longer support his heart. By April, 2013 Russ was one of a thousand people worldwide to have received a Total Artificial Heart at this point. The Total Artificial Heart is a surgically installed pump which provides circulation and replaces thehearts ventricles, leaving behind the aorta, main artery of the body, to connect his body to the device. This now meant Russ was not allowed to leave the hospital until he received a transplant. As New York State has the lowest percentile of residents signed up to be a donor the average time wait time was well over a year. His muscles began to deteriorate, his appetite had gotten lost in the shuffle, he was on dialysis because his kidneys began to shut down and he was on and off a ventilator, so he received a tracheotomy. He couldn't talk or walk and had constant infections in his chest, so he had an opened sternum incision with a wound vac installed for the majority of the stay. Russ started losing his hair and eventually shaved his head. His mind needed a heart more than his body did at this point. Pam visited Russ at Mount Sinai driving from Long Island to Manhattan 7 days a week and bringing the girls as often as possible. He just wanted to go home. The doctors say that the days with the most likely chances to receive a donor organ are holidays due to all the drunk driving. Well, 4th of July came and went with hearts that were not suitable and took hope with them. August 4th, 2013, Russ' wife Pam pulled into the driveway at home after spending the day at Mount Sinai and received a text from Russ, “They found a heart.” Pam packed up the girls and a few family members, the day had finally come. After a 23 hour long surgery the surgeons at Mount Sinai had done their best. The pulmonary hypertension in Russ' heart was like a pressure washer- it was tearing holes in his heart faster than they could fix him. There were machines pumping his blood for him, breathing for him and he had used 36 pints of blood in 12 hours because he was bleeding out. Russ, after a 3 day long battle and more surgery lost the war on August 7th 2013. His life was a medical miracle from day one because they did not know what would happen to him as his condition progressed. Since his passing there has been research about transplantation from Total Artificial Hearts and Transposition of the Great Vessels and it is now a plausible idea. In Russ' passing it was known that there was no way someone who left such an impact on the world could ever be forgotten about. Russ' family members started Hearts for Russ in hopes that other families would not have to go through the pain and suffering of losing someone when it could have been prevented with more awareness and research surrounding the cause. Russ' journey brought him to support group meetings with Long Island TRIO (Transplant Recipients International Organization) and through the meetings gained great hope. He met people who had gone through the same things and been successfully transplanted for upwards of 10-20 years and people shared their knowledge, experiences and transplant stories. Long Island TRIO became dear to his heart and Russ now has a plaque in the Eisenhower Park Donor Rose Garden dedicated to him and his life. Russ’ daughter Carollynn has been a member of LI TRIO since she was 12 and she continues to go to many meetings alongside Hearts for Russ Vice President and Russ’ lifelong best friend John Redican. Since Hearts for Russ founding in 2014 they have proudly supported LI TRIO. Hearts for Russ has thought about what would have helped us through the last year of Russ’ life and in doing so have discovered many wonderful organizations. One of them being Harboring Hearts who provides emergency housing, transportation, food and emotional support programming to heart transplant, liver transplant and cardio-thoracic surgery patients and their caregivers. Hearts for Russ has found importance in education and awareness around organ donation and transplantation and began an essential partnership with Donate Life NY. Donate Life helps educate staff and customers queries about the cause through the Department of Motor Vehicles. Each year 80% of the new donor enrollments come from DMV transactions so this has been an integral partnership to increase donor roles. In addition to these outstanding organizations we have partnered up with Northwell Health Hospital to create a pilot program. When a loved one passes on and is eligible to be an organ donor the loved ones are faced with the difficult question of whether or not to donate their organs. This program will provide proper training and education to new employees to help aid in support during the organ procurement process. Hearts for Russ and Northwell agree that with proper education and support more people will be able to effectively decide to donate their loved one’s organs during the most difficult season in their life. Hearts for Russ has had countless other opportunities that we never imagined when we started this organization to keep Russ’ memory alive. Most recently we have created a short film in tandem with Emmy nominated director Michael Drucker and LI TRIO profiling the success stories of 3 young adults transplants that has won multiple awards. Hearts for Russ is grateful for all the support and funds that have been raised since the founding in 2014 and continues to be inspired every day to work towards raising annual donor enrollment numbers.
We hope that you will fight alongside with us.
Russ with Pamie (wife) holding Cydney (7) and Carollynn (12) waiting for a transplant at Mount Sinai with a Total Artificial Heart in 2013.