My life has been a constant journey with congenital heart failure since birth, requiring multiple surgeries when I was an infant. While these interventions helped me immensely for years, my condition began to worsen significantly in 2016, and by 2022, I needed much more intensive medical care.
Recently, doctors found a second aneurysm, and this one is very large. Its size means surgery isn’t an option due to the high risk involved. I’m currently on medication, hoping to slow the aneurysms’ growth, but there’s no way to remove them or prevent more from forming. A heart transplant isn’t a viable option for me for several reasons, and even if it were, the waitlist can stretch for years. My cardiologist shared with me this week that if my current medication works ideally, I might be blessed with another three years, but they can’t say for sure – it could be a week, or it could be three years. Beyond heart failure and the two aneurysms, I’m managing multiple other complex heart conditions. While this news is incredibly difficult, I’m trying my best to cope and remain hopeful.
A Glimmer of Hope, Then a Crushing Setback
Just when I felt overwhelmed, my heart doctor called with what seemed like a lifeline: a potential treatment option in Massachusetts that could help slow the growth of my aneurysms. I immediately said yes, canceling everything to pursue it. For a brief, precious moment, there was incredible hope – a chance, even if it was just for a little more time.
But my hope was shattered yesterday afternoon. Despite being medically eligible for the treatment, I received a devastating call: my insurance will not cover it. Due to recent policy changes, it’s now considered a new/experimental treatment, meaning I would be responsible for over $9,000 a month out-of-pocket. This amount is simply impossible for me to afford.
The constant cycle of hope and crushing disappointment is incredibly difficult. To be told there’s nothing more doctors can do, then to find an option that might offer some precious time, only to have it snatched away due to financial barriers, is truly heartbreaking. Knowing that the one real option for potentially slowing down this progression is now out of reach is devastating.
I’m Not Giving Up, But I Need Your Help
This entire journey is physically exhausting and emotionally draining. While I am tired, please understand that this does not mean I am giving up. I am fighting with everything I have, but it’s an incredibly hard battle, and I am weary.
This is why I’m reaching out to you, my community, for help. I’m starting this fundraiser campaignvto cover the initial months of this crucial experimental treatment, travel costs to Massachusetts, and ongoing specialized medical expenses that aren’t covered by insurance. Every donation, no matter how small, will make an immense difference. Your support would provide me with the chance to access this vital treatment, potentially giving me more time and a better quality of life.
Thank you for taking the time to read my story. Your generosity, thoughts, and prayers mean more to me than words can say as I continue to fight.
