Pat Sullivan and Bob Romer joined host Cricket Paulsen to share stories as heart transplant recipients and how they were inspired to start the Heart Brothers Foundation. The mission of their foundation is to bring resources together to help patients and their loved ones survive a life with Heart Failure and all its challenges.
Pat and Bob met while patients in the Tufts Medical cardiomyopathy unit in Boston, Mass and quickly became a support system for each other and other patients. They both spent a year in the hospital due to the serious nature of their conditions pre-transplant. Usually patients are able to come in for treatment and return home using and LVAD or Left Ventricular Assist Device. An LVAD is a bridge to transplant and has been greatly improved and reduced in size over the last ten years. Although patients are mostly seen as outpatients they do need to be within a certain range of their transplant hospital of 4 to 5 hours in case a heart does become available. In some cases this means incurring high expenses such as transportation like a helicopter or ambulance. Adding these costs to other non insurance covered expenses really adds up and is quite taxing to many patients finances. The Heart Brothers Foundation was created in part to assist with these financial burdens. Unexpected bills from hotels, parking, travel, food and gaps in insurance coverage are not what families should have to stress about during this process.
A major reason Pat and Bob founded Heart Brothers is to provide emotional support and information to patients and families. When both of them were diagnosed they spent a good deal of time in denial at first but were buoyed by the support of their wives and doctors. They remembered being frustrated at the lack of information available at the time. Their wives would look up medical terms on the internet and couldnt find any support groups for caretakers. Helping families cope with the uncertainty of living with a loved one with heart failure is a huge part of the Foundation. There are resources on their site for finding psychologists to help with Post Traumatic Stress Disorder and for learning how to remain positive. Pat mentioned that negative statistics are easy to believe but he chose to not give in to them. They also have a virtual support community on the website.
The statistics on heart failure are truly daunting:
Luckily, the rate of heart disease is falling in the USA due to awareness of the need to have a heart healthy diet and get exercise. Unfortunately, heart failure is rising due in part to the excellent rate of triage and recovery when people have heart attacks. Our population is also living longer. While still alive, the persons heart is damaged and often begins to fail. Many people live successful lives after transplant. Pat and Bob have both done well with some setbacks for Pat. Both men are very thankful for the wonderful care they received from all of their medical team, particularly at Tufts. The Brothers and their families now devote a large amount of time to the Heart Brothers Foundation which is a 501c3 charity. All of the money raised goes directly to helping patients and families struggling with heart failure. Please visit their website for more information or to make a donation and look for a book in the future about their experiences: www.heartbrothers.org.