Understanding AVM: Keara's Story and Support

Arteriovenous malformation (AVM) is a complex and often misunderstood condition that can significantly impact the lives of those affected. Keara's journey with AVM sheds light on the challenges and triumphs faced by individuals living with this condition. This post aims to provide a comprehensive understanding of AVM through Keara's story, the support systems available, and practical insights for those navigating similar paths.

Keara at her College graduation at only 19 years old

What is AVM?

AVM is a rare vascular condition characterized by an abnormal connection between arteries and veins, bypassing the capillary system. This can lead to various complications, including bleeding, seizures, and neurological deficits. Understanding the nature of AVM is crucial for both patients and their families.

Key Characteristics of AVM

• Abnormal Blood Flow: In a healthy vascular system, blood flows from arteries to capillaries and then to veins. In AVM, this flow is disrupted, leading to high-pressure blood flow directly from arteries to veins.

• Location: AVMs can occur in various parts of the body, including the brain, spine, and limbs. The location significantly influences symptoms and treatment options.

• Symptoms: Common symptoms include headaches, seizures, and neurological issues. However, some individuals may remain asymptomatic for years.

  
  

Keara's Journey

Keara was diagnosed with an AVM at the age of 17 while she was in labor. Her story is one of incredible resilience and determination in the face of overwhelming challenges. Despite her young age, she confronted the severe physical and emotional toll of living with an AVM, ultimately passing away at the age of 19.

Initial Diagnosis

Keara’s journey with AVM began years earlier with persistent headaches, nosebleeds, and episodes of coughing up blood. She and her family visited many doctors seeking answers, but the proper tests were never ordered. It wasn’t until she was 17 and went into labor that complications during childbirth finally led to the diagnosis. An MRI revealed a very large AVM in her brain. The doctor described it as a “ticking time bomb,” warning her that she could die at any moment. For someone living with AVM, pregnancy and childbirth can be extremely dangerous. Giving birth to her child was a traumatic experience, but Keara faced it with remarkable strength and resilience.

Treatment Options

Keara and her family explored treatment options for her AVMs, which were located in her brain, lungs, and kidney. The very large AVM in her brain was by far the most concerning.

Treatment options discussed included:

• Surgery: Because of the AVM’s size and location in her brain, doctors determined that surgical removal was extremely high-risk. They explained it was too dangerous to attempt locally and suggested looking for a highly specialized team, possibly overseas.

• Embolization: This minimally invasive procedure blocks the blood vessels feeding the AVM to reduce the risk of bleeding.

• Observation: In some cases, doctors may recommend careful monitoring, but this was not suitable given the size and symptoms of Keara’s brain AVM.

  
  

Despite researching every possibility, the risks remained too great, and they were unable to find a surgical team willing to proceed. Keara faced these limited options with courage while focusing on her child and making the most of her time.

The Importance of Support Systems

Support systems play a crucial role in managing AVM. Keara's experience highlights the importance of having a strong network of family, friends, and healthcare professionals.

Family and Friends

Keara's family provided unwavering support throughout her journey. This support was vital in helping her cope with the challenges of living with AVM.

Healthcare Professionals

Keara worked hard to build a relationship with her healthcare team. She attended numerous appointments, asked questions, and advocated strongly for herself as she navigated life with AVM. When she became pregnant a second time, the pregnancy placed an enormous strain on her body — she became significantly sicker than during her first pregnancy. She openly discussed her concerns and options with her doctors. Due to the extreme risks posed by the AVMs, the medical team recommended terminating the pregnancy. Afterward, they prescribed birth control.

Tragically, Keara passed away at age 19. In reflecting on her care, her family feels more could have been done. They later learned that embolization — a procedure involving injections to block blood flow and potentially shrink the AVM — might have been an option worth exploring more aggressively. They also believe the doctors could have considered more permanent solutions, such as tubal ligation, to prevent future high-risk pregnancies, and that the hormonal effects of birth control may not have been the safest choice given her condition.

Practical Insights for Managing AVM

For those navigating life with AVM, Keara's story offers valuable insights and practical tips.

Educate Yourself

Understanding AVM is the first step in managing the condition. Researching the latest treatments, potential complications, and lifestyle changes can empower individuals to make informed decisions about their health.

Communicate Openly

Open communication with healthcare providers is crucial. Keara learned to express her concerns and ask questions, ensuring she was an active participant in her treatment plan.

Prioritize Mental Health

The emotional impact of AVM can be profound. Seeking therapy or counseling can provide individuals with coping strategies and a safe space to express their feelings.

Stay Active

Physical activity can help improve overall well-being. While Keara focused on spending meaningful time with her family, friends, and daughter, many people find that activities such as walking or yoga can help reduce stress and support a more positive outlook during difficult times.

Build a Support Network

Surrounding oneself with supportive individuals can make a significant difference. Keara's family and friends were instrumental in her journey, providing encouragement and understanding.

Conclusion

Keara's story is a testament to the strength and resilience of those living with AVM. By sharing her experiences, we hope to raise awareness about this condition and the importance of support systems. For anyone navigating a similar path, remember that you are not alone. Seek knowledge, build connections, and prioritize your well-being. Together, we can create a community of support and understanding for those affected by AVM.