As it appeared in the Fall 2014 Lifelines newsletter:
A well-informed caregiver with appropriate emotional support is essential to the well-being of the transplant patient.
Like most caregivers to loved ones pre- and post-transplant, we had a lot of questions and longed for support and understanding. We were unable to find a group dedicated to the transplant caregiver and felt our needs were not being met on the many forums dedicated to transplant patients. That is why we founded a Facebook group, Transplant Caregivers – Partners for Life, on September 8, 2013.
Our goal is to provide a safe haven designed exclusively for caregivers of loved ones pre- and post-transplant. Our virtual forum is the platform for discussions on the unique circumstances, challenges and opportunities faced during each phase of the transplant process. Most importantly we have created a community to help others know that they are not alone on this extraordinary journey called transplant.
We have found that the role of the transplant caregiver is different from other types of caregiving. Pre-transplant, we do not have the opportunity to process our emotions as other caregivers. We do not go through the natural steps to eventually accept that the end is near. We are stuck in limbo, just waiting. The reality is that we are watching our loved ones slowly deteriorate as life slips away and yet they might be fortunate to be the recipient of a life-saving gift. Post-transplant our situations are unique; we need to learn so much. It’s a drastic change from pre-transplant medication and diet changes, learning to understand new symptoms and understanding the psychological and emotional hurdles. We need to shift gears and let our loved ones become more independent. We need to remember that how we treat our loved one has everything to do with their emotional and physical recovery. But most of all, we have to learn to live again! We’ve been given a second chance, a gift that can only be repaid by being dedicated to taking care of our donors’ gift(s) and bringing awareness to the cause.
To date, our forum consists of over 550 caregivers from all over the world. They are caring for loved ones at different phases of the transplant process and in need of different types of transplants. We are inspired each day by the heartfelt stories provided by our members. Topics on the page vary from day to day. A typical day may consist of discussions on general emotional support, questions on how to successfully fundraise, what to expect during the transplant evaluation process etc. We have enough representation that each question or comment is addressed by a member who can provide helpful insight and support. We are grateful that we have a mechanism in place to help others by sharing similar life changing experiences. We are all ordinary people thrown into extraordinary circumstances.
If you are a caregiver of a loved one pre- or post-transplant, please join and share your extraordinary journey, knowing that you are not alone.
Renee Ambrosio-Alexander (Caregiver)
I will always remember that fateful night my fiancé called me from the hospital to tell me, “They found a match.” Though we had many plans to tie-the-knot, chronic illness has a way of interfering with life events, but we held on to our dreams. We were married bedside at 3:00am in the hospital on the eve of his transplants.
Our lives have changed a great deal during this 17 year battle. At times, it has been heart wrenching, impossibly difficult, filled with overwhelming uncertainty and isolation and yet remarkably rewarding. We are blessed to have a second chance and to possibly grow old together. Personally, my life has been affected in profound ways. When I stopped asking why did this happen and started searching for what I could learn from these challenges, everything changed.
This journey called Transplant has been and continues to be a road of hope. My goal is to help other caregivers by providing them with the resources needed to navigate through the different stages of the transplant process.
LeeAnn Fitzgerald (Caregiver)
Three and a half years ago my husband, after 6 years of living with chemotherapy-induced cardiomyopathy, found out that he needed a new heart. As I had done with his cancer diagnosis and with his heart failure diagnosis, I put on a brave face and went into caregiver mode. I had nobody to talk to who would understand - nobody to tell me that it was ok to feel frustration, exhaustion and sadness...so I only felt guilt. For the caregiver in the transplant community, the thanks are many, but the resources are few. Since then, I have done what I can to help other caregivers through the inspiration of my husband’s success story, and through understanding and emotional support.
Renee Ambrosio-Alexander is a marketing healthcare professional with over 24 years of experience across the healthcare spectrum, including 14 years in the pharmaceutical industry. She is one of the founders of “Transplant Caregivers – Partners for Life,” a virtual forum where she and others mentor caregivers of loved ones pre-and post- transplant. She is caregiver to her husband, who received a dual heart and kidney transplant in 2013. Renee resides in Doylestown, PA with her husband and two rottweilers.
LeeAnn Fitzgerald worked as an elementary school teacher for many years before she decided to apply her experience to interactive project management in the pharmaceutical industry. She is caregiver to her husband, Derek, of 14 years who has since gone on to compete in endurance events such as marathons and triathlons (including 2 full Ironman triathlons), however the greatest gift that has come from his gift of life has been the birth of their daughter, Emma, in January. She co-founded “Transplant Caregivers – Partners for Life” so that others could find the support that she longed for during her journey.