Stop asking “why you?” and instead start asking why NOT you?
That is the UNSTOPPABLE and resilient mindset of our incredible and beautiful guest on The Red Bra Project.
Meet Amanda DeJesus.
Heart transplant survivor of 17 years…and counting.
Podcast Co – Host of Unfiltered Survivors.
Fighting for her 3rd chance as she is waiting for a new heart AND kidney.
In episode 76 on The Red Bra Project Amanda shares with us so many tender and honest parts of her story from what it was like to be a teenager who survived a heart transplant to friendships, relationships, hopes, dreams and making them all come true. Including her amazing career, finding and falling in love, support system(s) and even traveling and walking the Wall of China at 19 years old.
We were so honored to have this conversation with Amanda, share her story, celebrate and raise her up!
Amanda begins sharing her story with us at her very beginning, birth. Amanda was born with heart disease and had her first open heart surgery at seven DAYS old. As Amanda got older, her heart disease progressively got worse. In the middle of high school at 15 years old Amanda was put on the transplant waiting list awaiting a new heart, her new heart. She waited in the hospital for 3 months with her Mom by her side every step of the away. Amanda received her heart and she along with her family were incredibly grateful that their prayers were answered and Amanda had a second chance at life.
Along with this amazing chance came an enormous responsibility. The next chapter of Amanda’s life required Amanda to grow up literally over night. If you can begin to imagine she returned to high school a completely different teenager having gone through so much. As a heart transplant survivor now, Amanda became an adult very quickly to take on her new challenge of taking anywhere between 26 – 30 different pills a day while not having an immune system and trying to learn everything possible to protect it to grasping exactly how to survive with her new organ. Again, Amanda was facing a life or death situation. Relating to the common teenage challenges such as going to prom, if a boy liked her and being accepted was replaced with literally learning how to take care of herself and her heart so her body would not reject her new organ.
Growing through the teenage years naturally holds so many challenges, changes, learning to work through uncomfortable emotions and so much more. Amanda recognizes that she has a wonderful support system in her family but to find another teen who could identify with exactly what she was going through both being a teenager and learning how to survive and thrive with a new heart often felt lonely. With time, Amanda found other teenagers who had transplants like herself which really helped with being able to identify and relate with the feelings and emotions other teenage survivors were going through.
Amanda tenderly shares about survivor guilt and a little bit about what that feels like and how support group(s), a good therapist and reaching out to other transplant survivors can help to navigate those real feelings.
Amanda welcomed and looked forward to putting high school behind her and moving onto a new chapter in college. With new relationships and friendships the question that quickly rose to the surface for Amanda was, “When do I tell people about my illness and how do I explain to people that it is not going to hinder what I can do?” She shares her perspective about what has worked for her, timing and sharing her whole self with other important people in her life when forming relationships.
One of the struggles that Amanda really wanted to make easier for other transplant survivors to overcome is when a doctor and dietitian hands over a new diet recommendation to follow many people are at a lost. “I wanted to be able to help people with that because I know I definitely struggled with it,” Amanda said. From learning how to read a food label to recipe ideas and even doing the grocery shopping for someone who needs support, Amanda is always willing to lend a hand offering guidance.
“Transplant patients as an entity in itself it is a very small community. You can very quickly start to feel alone because someone else does not understand. I don’t want anyone else to feel alone so I always open my door to be able to say, this is what I went through, this is my struggle, these are the tips I can give you…just because I want to be able to help,” shared Amanda.
After many years of working with various organizations telling her own story Amanda realized it was her time to tell her story to benefit others and not just for an organization. So, Amanda and a friend of hers who met through The American Heart Association who is a stroke survivor Kelly started their podcast together called, Unfiltered Survivors. Their personalities are completely opposite which is a beautiful thing and wonderful way to share various perspectives about the good, bad and great about being a survivor. It is completely unfiltered, relatable and real!
Goodness knows that Amanda has dealt with her fair share of fear in her life. Both expected and unexpected. What has really helped her to work through her fear has been her strong faith and she shares candidly, there is no other option because the other option is literally death.
“To be honest and unfiltered there is no other option. I just have to fight. I know that some days I’m going to get my butt kicked and that’s OK then there’s other days I thrive and do really well. It’s about finding that balance and knowing that building an amazing support system has helped,” Amanda shared.
About two years ago Amanda got sick again and is back on the heart and kidney transplant list. After years of medication and the toll it took on her kidneys she now needs a kidney to go with her new heart. To give her body it’s best chance to accept both of the organs they do have to be from the same donor. Between the time she was put back on the transplant list and now she fell in love. Yes, fell in love with an incredible man who she could not be happier with and was always an item on her dream list.
Amanda shared with us in our conversation about the differences of what waiting and preparing for her name to come up on the transplant list looked like when she was a teenager and how it is today unexpectedly facing the whole process again in her 30’s, during a pandemic. Can we pause for a moment here and reflect back on our opening sentence: Stop asking “why you?” and instead start asking why NOT you? This, this has become Amanda’s mantra and as you can tell it is working beautifully for her. She keeps living life every moment she can because WHY NOT? She knows she has been blessed with a second chance at life and will continue to make those memories and make those moments count. She realizes everything she has experienced has been a part of her journey and whatever the future holds she is going to do her best to go with the flow, that is all she can do along with a side of grace.
Amanda has leaned on her support system of survivors to help educate her about a kidney transplant. It is and will be a new learning process and she is forever grateful for continuing to create a solid and dependable support system. She reflects back on all of the coping mechanisms and tools she learned in her 20’s that are also helping to support her so much here and now, today.
An important role in Amanda’s life is being a Lyfebulb Ambassador. Lyfebulb is a safe and highly monitored patient engagement platform that is a community for patients with chronic illnesses to connect, support and inspire one another. From chronic kidney disease to transplant to inflammatory bowel disease, multiple sclerosis and more it is a community where patients and care partners (who are those best suited) provide insights about the journey and even come up with solutions to problems faced during that journey. Amanda is so honored to be a part of it and encourages anyone with a chronic illness to take a look at the organization for themselves…it is an incredibly supportive community to help combat the loneliness that is often associated with being a chronic illness warrior.
“You have to be able to find someone to say I’m struggling, especially during a pandemic where we are already immune compromised,” Amanda shared. “Check on each other, say “hello” to one another, even if someone doesn’t have a chronic illness. People don’t always realize how big of a difference it makes to just reach out and check in on one another.
We honestly could have talked with Amanda for hourssss…..she has so many multi – facted parts of her story that simply inspire.
Including the moment when she announced to her Mom during her college orientation (to be an athletic trainer) that she wanted to be a Chef. Amanda just felt that was the correct path for her. Her Mom (quick shout out to Amanda’s Mom one of Amanda’s number ones. Amanda shares with us throughout our chat just how amazing their relationship is and how much it means the world to her) supported her and said if you can get in and find the funding go be a chef!
Amanda did both. She went to culinary school and became a Chef. While Amanda was in culinary school she was presented with the opportunity to apply to and study abroad in China. Initially Amanda shared that she was thinking, whaaaa? I’ve had a heart transplant and now I’m going to ask to go study and live abroad in China. “Why Not Me,” Amanda thought. She asked her parents and doctor and they both kinda put one another on the spot saying that if one said “yes” then the other half would.
Amanda excitedly shared, “I ended up walking The Great Wall of China at 19 years old after having a heart transplant four years ago. Those moments, you know what they sound crazy, but “Why Not You?!” (Gahhhhh, we loooove this part of Amanda’s story!)
“I say to everyone, why not you? You can find a million reasons why not to do something, but can you find a million reasons why? The worst they can do is say no,” said Amanda.
We fell in love with Amanda’s positively infectious, real and down to earth personality. She shines her beautiful light on so many others every day in the hopes to remind those who are on the national transplant waiting list and who are transplant survivors that they are not alone. That their feelings, concerns, fears, thoughts are valid.
Through Amanda’s heart healthy recipes and guidance found on her website to her podcast Amanda is reminding people that a second and even third chance at life is possible and that we can learn so much from one another’s story – which is why she continues to share hers.
If there is ONE episode you tune into this year or share with someone who needs Amanda’s story in their life, this is the ONE.
Amanda’s Red Bra Moment:
There are many! But I will say many years ago when I started to decline again at first, then I stabilized then began to decline once more to where I am now. The first time I declined, they looked at me and said I had to stop working 12 hours in a hot kitchen 6 days a week it was too much stress on my body and heart and I was going into rejection because of it. That broke me because that’s what I love to do. I love cooking, I love helping people, I love food. I had to find a new career with a culinary degree and I can’t work in a kitchen. After much thought and process it would start the journey of helping others. Of then writing a cook book, starting a website and going out and telling my story. I wasn’t always good at telling my story, sometimes I was in a room with people who were twice my age. I did it though. I wasn’t sure they would be able to relate to me, but I was honest and unfiltered and people did. So I think being a young 23 year old and my entire life changing and not being able to do what I love to finding a new passion in which I love and innovating it with a podcast would be my Red Bra Moment.
(Yassss….Amanda, we LOVE your Red Bra Moment, perspective, tenacity and resilience)
Loving what you have read so far? Please share this story with a friend who may need it in their life. 😉
Thank you so much Amanda for joining us and sharing your incredible story with us and others. You are a true shining light. Keep on rocking it!
Tap play on Episode 76 with us and let us know how you are feeling after listening in!
Here’s where to connect with the brilliant Amanda DeJesus:
Amanda’s Website – Chef With A Heart
@chefwithaheart on IG (Follow Amanda as she fights for a 3rd chance. She needs a new heart and kidney)
Lyfebulb Platform for Survivors – Learn More Here
Thank you for stopping by, you are so appreciated! We hope this story inspired you or someone you know on some level. We know it did us, please share away. Always wear that red bra underneath it all and make sure to join the party over @theredbraproject!
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Xx,
The Red Bra Project
