From Heart to Heart
After surviving Acute Heart Failure at 33 years old I felt very alone in my recovery. I had never met anyone with heart failure let alone someone near my age. After beginning to share my story publicly and on social media I began meeting many other people who had also survived Acute Heart Failure. Some of these people had experienced it years before me, some had received a heart transplant and others were loved ones with family members currently hospitalized due to it. Connecting with these patients and family members was carthartic and opened my eyes to a whole new community of people I now had much in common with. I wanted to create this podcast so that other people who experienced heart failure could find this community of beautiful people and find the same hope and comfort that I did from hearing their stories. I hope that this podcast not only opens your eyes to a whole new community of brave, inspiring individuals, but that you also learn more about heart failure and all the ways in which it can affect people. Thank you for being here!
Disclaimer: This podcast does not include any medical advice and should not be taken as such. All views are our own and they are based upon individual lived experiences. Please speak with your healthcare provider if you have any questions related to your own health.
If you'd like to follow along on my heart failure advocacy and recovery journey you can find me on Instagram @hillarysheart. For any questions, comments or inquiries you can contact me via email at hillary@hillarysheart.com.
From Heart to Heart
Sienna's Story - HLHS & Severe Heart Failure
In today’s episode you’ll get to hear from Fano and Francesca, the proud parents of a beautiful 4yr old girl named, Sienna. Sienna was born with HLHS which stands for Hypoplastic Left Heart Syndrome. HLHS causes the left side of the heart to be underdeveloped. Thankfully it has a good prognosis with the help of multiple surgeries including an open heart surgery that usually occurs when a baby is just a few days old. Sienna was doing really well until their entire family got sick with the flu in December of 2022 and it hit Sienna the hardest. Sienna was taken to the hospital while sick with the flu and was diagnosed with severe heart failure. Sienna has not left the hospital since that day. Next week will mark the 2 year anniversary of Sienna being inpatient while awaiting a heart transplant. Fano and Francesca share their heart wrenching account of being told multiple times that Sienna had been perfectly matched with a donor heart only to have something fall through including a donor family rescinding their offer while Sienna was in surgery. I learned so much from this conversation and I know that you will too. This was a first for me on the podcast as I’ve never had anyone discuss a pediatric heart failure story. This conversation had me audibly choked up in the end but I’m so grateful for these incredible parents for sharing Sienna’s story.
For more information on organ donation please visit unos.org. To read some incredible donor and transplant stories filled with hope please visit donorconnect.life.
To follow Sienna's journey on Instagram follow @wholeheartedlysienna
You can also follow me on instagram @hillarysheart
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🫀, Hillary