Doctors had always given one explanation or another for her symptoms, but nothing related to her heart.
Heather Wartenberg had many syncope episodes (fainting/passing out) over the years, starting when she was a teenager. Doctors had always given one explanation or another, but nothing related to her heart. In 1998, at 21 years old, her syncope episodes became more frequent. She attributed it to stress, work, being a single mom and going to school. One morning, when she was clocking into work, she passed out again. She worked at a doctor's office at the time and recalls that she just wanted to keep working, that she needed to make money to support her daughter and herself, but they insisted she go to the emergency room immediately.
At the hospital she was diagnosed with Hypertrophic Cardiomyopathy (HCM) and was told she needed a myectomy (open heart surgery). She was admitted and scheduled for surgery only 2 days after being diagnosed. Heather was terrified, everything was happening so quickly, and her biggest concern was who would take care of her daughter.
Before her diagnosis, Heather had no idea of the possible correlation in her family history of “heart attacks” on her father’s side of the family with her own diagnosis of HCM. Her paternal grandmother had died of a “heart attack” in her 60’s but there also many more family members that had passed from “heart attacks”. Since her diagnosis, her father has also been diagnosed with HCM and she found out that a cousin had also been diagnosed only a couple of years before her own diagnosis.
A year after her myectomy, Heather was still very symptomatic and had many bouts of arrhythmia. She had her first pacemaker/defibrillator implanted in 1999. Over the next several years, her health continued to decline. She battled with arrhythmias ongoing, and her ICD appropriately discharged on more than one occasion. Heather had an Alcohol Septal Ablation to address a residual gradient. She also had a radiofrequency ablation to treat Premature Ventricular Contraction (PVC) and Atrial Fibrillation (A-fib). In 2019 she underwent surgery again to replace her pacemaker/defibrillator and lead extraction from the old device. The surgery took almost 9 hours!
By Fall of 2021, Heather’s health had deteriorated to the point where she just couldn’t function. Stairs were impossible, even cooking a meal was difficult to manage. Her cardiology team had nothing more to offer to give her the quality of life she needed and deserved. Heather reached out to the Hypertrophic Cardiomyopathy Association (HCMA) and spoke with Lisa Salberg. Lisa put her in contact with the University of Colorado Heart Transplant Center and she was officially listed for a heart transplant on December 30, 2021. Shortly after being listed, Heather received the call that a donor heart was found, and she received a heart transplant on January 8, 2022.
Heather reflects that there are many areas of her life that have been impacted by HCM. Relationships, emotional well-being and work are only just some. “It is hard for those who don’t have HCM to understand that we don’t feel well even though we look fine. Our activities are limited at times. It’s not that we don’t want to do it, we just can’t do it.”
While it is a rough recovery at times, Heather is healing from her transplant. There are doctor's visits, a lot of medications, and having to educate herself and others on what she can and can’t do in order to protect this gift she was given. “Outside of being a mother, the most phenomenal experience of my life has been my transplant. Someone else’s heart is actually keeping me alive. I’m really, humbly grateful to the gentleman and his family who gave me life again.”
According to Heather, “The work of the HCMA changed my life and ultimately saved it. I am very grateful for their support, guidance, resources and the referral to my transplant team. I see all the work they do, and I want to be a part of it by sharing my experience in an effort to help other patients.”
**Update: It is with great sadness we add that Heather Wartenberg passed away on August 15, 2023. 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 Memorial
Please share this story to bring awareness to Heart Month!
To learn more about accessing care at a HCMA Recognized Center of Excellence, go to https://4hcm.org/center-of-excellence/.
To learn more about hypertrophic cardiomyopathy (HCM), go to https://www.4hcm.org.
#4HCMAwareness #HCMStrong #HCMDay #4HCMWarriors #4HCM