Heather Wartenberg passed away on August 15, 2023. She was diagnosed with HCM at the age of 21 and she had a heart transplant in January of 2022. After transplant, Heather suffered from chronic rejection, which ultimately led to heart failure, her cause of death. She was only 47 when she passed.
Heather's daughter, Alexandria, shared, "I'm still having a hard time. We were very close. She was truly my best friend, so I didn't just lose my mom. I lost my best friend. She was only 16 when she had me, we grew up together."
"I always used to say that she was my Phoenix. I told her that a million times because, while she didn't have an easy life, she always carried herself beautifully, with a smile, and she was kind and sweet to people. I am truly the person that I am because she was the most incredible role model. She was brave, compassionate, kind, a warrior, a fighter, hardworking, and she accomplished so much with so many obstacles."
"When we found out she needed hospice we of course cried together and she [Heather] said, “I never wanted to not be in your life.”
As an HCMA volunteer, Heather's compassion was apparent.
Heather was a "Share Your Story" volunteer because she was passionate about sharing her patient journey to help educate others. She also frequently participated in HCMA's "Transplant Pathway" online discussion group. First as a patient facing transplant and, after transplant, to lend support to others facing transplant. Sharing her experience with others on that pathway was important to her and very impactful to those she helped.
Heather's memory will continue to live on and make a positive impact on the HCM community. Her patient story is featured on HCMA's website under the "50 States of HCM", representing the state of Colorado in support of the Healthy Cardiac Monitoring Act (HCM Act). The HCM Act is proposed legislation to help save and improve lives by identifying children and families at risk for cardiac disorders in time to act.
Heather supported this legislative effort and she stressed the importance of families knowing their heart health history. When she was asked how her life would have been different if she had been diagnosed earlier, her response was, "If I had been diagnosed when I was having syncope episodes in my early teenage years, instead of in my 20s, there would have been a lot more opportunities for me. Maybe I would have gotten treatment earlier that would have prevented me from having to have a heart transplant."
Heather will truly be missed by the entire HCMA community, her family and friends and especially by her daughter, Alexandria. Rest in peace, dear HCM Warrior Princess; your battle is done.
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To learn more about hypertrophic cardiomyopathy (HCM), go to https://www.4hcm.org.
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