Do You Know Someone Who Could Benefit from Single Ventricle Patient Day?
Four individuals with single ventricle physiology created Single Ventricle Patient Day in 2018. Now in its third year, the event founders share why they felt compelled to create a Single Ventricle Patient Day, its impact, and why others should consider registering and joining this year’s event on Saturday, October 30 from 11 a.m. to 5 p.m. ET.
Click here to register for Single Ventricle Patient Day.
Four individuals with single ventricle physiology created Single Ventricle Patient Day in 2018. Their mission? To create a resource for patients just like them. The event is a day of informational programming that focuses on a wide range of topics, including mental health, family planning, transplant and devices, exercise, and more.
A unique element of this event, in addition to it being patient-only, is that each topic covered includes a patient and a provider speaker, allowing for more well-rounded discussions.
Apart from presentations, patients also have the opportunity to interact with each other through breakout sessions and dedicated discussion times to create connections that last a lifetime.
This year’s event will take place virtually on Saturday, October 30 from 11 a.m. to 5 p.m. ET. Registration for the event is free and open to any individual 14 years of age and older with single ventricle circulation or post-transplant.
For an overview of the day, view the agenda at a glance. Because it will be held virtually, this year’s event will be available globally. Additionally, there is a registration option for individuals who are unable to attend the event but would like to receive video recordings.
For its third year, the event founders are eager to make this Single Ventricle Patient Day the most impactful yet. Below, they share why they felt compelled to create a Single Ventricle Patient Day, its impact, and why others should consider registering and joining this year’s event.
Name: Tyler Sajdak
Age: 28
Diagnosis: HLHS
Why did you want to create Single Ventricle Patient Day?
I got involved because I saw a lot of attention being paid to getting kids the care they need to get out of the surgery process, but not a lot of attention going to figuring out what to do as the kids aged into teens and adults. While the kids definitely need the care and it’s good that the care keeps getting better and better, us adults are looking at our lives and wondering what’s next and trying to navigate blindly. Being a part of the SV Patient day allows me the opportunity to connect with other SV patients and allows us to navigate life and learn from each other.
How has Single Ventricle Patient Day impacted you?
SV Patient day has given me the opportunity to meet new patients and new doctors. It has also given me the confidence to go out into the world by myself and figure out all that I need to thrive when I go somewhere new or visit someplace unfamiliar.
Why should others consider participating in Single Ventricle Patient Day?
Others should participate not only because of the benefit that it offers them (meeting new patients and getting new information about our diagnoses), but the bigger we can get this event, the more the doctors will listen to what we need and base their care on what direction we want to go with this. Doctor’s knowledge is wonderful and required, but patient input is so important, especially if the issues we’re dealing with are anatomical.
Name: Alicia N. Wilmoth, PA-C
Age: 41
Diagnosis: Unbalanced Atrioventricular Canal, Pulmonary Atresia, and Heterotaxy, s/p Blalock Taussig Thomas Shunt, Glenn Shunt, and Fontan procedure.
Why did you want to create Single Ventricle Patient Day?
As a young patient, I was always intrigued by science and medicine and knew someday that I would love to work in these fields. Especially as I became more and more grateful for the care, love, and support I had received by the medical community. Eventually, I turned to Physician Assistant studies to fulfill this dream and worked my way to becoming a Pediatric Cardiothoracic Physician Assistant. It was during my career at Cincinnati Children’s Hospital that I was able to be invited and get involved in amazing quality improvement networks like NPC-QIC and FON. Through these networks and interactions with other patients and providers, a discussion about creating a Single Ventricle Patient Day was born and I knew it was something I had to be a part of. For me, it was an additional opportunity to give back and connect with the medical community. More importantly, it was a way to share my journey so that those living with Single Ventricle physiology wouldn't have to navigate so many unknowns. My hope in creating Single Ventricle Patient Day was and continues to be a way for all individuals to actively participate in their care, share their CHD journey, and build community. Most importantly though, is providing a platform to share our experiences and wisdom with the medical community so that together we can work towards a better understanding of SV physiology, and improved quality and quantity of life!
How has Single Ventricle Patient Day impacted you?
SV Patient Day has been impactful to me in many ways. However, what has been most impactful is seeing firsthand what it means to SV individuals to meet someone that has struggled with similar health concerns. As an older SV patient, I have always questioned how long I was going to live and if anybody really understood the impact of CHD on my mental health. Being in a room with 50+ SV patients and finally being able to converse with someone that understood my journey was very comforting and rewarding. It also allowed me to connect with more SV patients and discover that there are older living SV patients! It also has been very awesome to see the medical community embrace the patient voice and encourage SV patients to play an active role in FON. As we continue to grow, I look forward to seeing the impact this joint relationship has on improving the mental health of SV patients and discovering answers about our physiology that will improve our quality and quantity of life.
Why should others consider participating in Single Ventricle Patient Day?
I would encourage others to attend SV Patient Day because I truly believe there is power in numbers. We all know that each one of our stories are different, which means that every story has the possibility to bring clarity to the abundance of unanswered questions we have about living with SV physiology. It also puts, as I like to say, faces to cases. By being a part of SV patient day, you are no longer just a medical case, you are an individual with a voice and opinions that truly do matter to the medical community. It’s a place where you can be the expert and a student and help all of us better understand SV physiology so that the future can be brighter for you and for those younger than you.
Furthermore, if nothing else, I would encourage others to attend SV Patient Day to build community with other CHD survivors and thrivers. I believe that many of us have felt very alone in this journey. SV Patient Day gives one the opportunity to meet other individuals that have struggled and triumphed through their CHD journey. It is difficult to describe the peace that one can acquire by just walking into a room (or logging on to a device) filled with individuals that share a similar journey.
Name: Tom Glenn, MD
Age: 31
Diagnosis: HLHS
Why did you want to create Single Ventricle Patient Day?
We felt like there was a deficiency in opportunities for patients with Fontan physiology to meet and connect with one another and wanted that to change. As we were designing the first session, we realized that this platform would also be a great tool and way to educate and empower patients as well.
How has Single Ventricle Patient Day impacted you?
Having the opportunity to meet with so many individuals with Fontan physiology has given me confidence in the field of pediatric cardiology. I have learned so much from all of the individuals with Fontan physiology that have participated and it gives me hope that we can unite and push this field forward; this will in turn help other patients for years and years to come.
Why should others consider participating in Single Ventricle Patient Day?
If you want to meet other patients like yourself or you just want to learn more about your heart, then participation in SV patient day is for you.
Name: Meg (Roswick) Didier
Age: 29
Diagnosis: HLHS
Why did you want to create Single Ventricle Patient Day?
The team came together in 2018 after attending the NPC-QIC Fall Learning Session and saw a clear need for a similar event but dedicated to the patient population and their needs. After attending multiple NPC-QIC Learning Sessions, I had the opportunity to see firsthand how powerful collaboration can be between patients, families, clinicians, researchers, nurses, and caregivers. We wanted to take that collaborative spirit and build a patient-only event that created a supportive and uplifting environment where individuals with single ventricle could openly share their thoughts and experiences with others like themselves. As a patient myself, I feel personally attached to this event. When I sit back and think about the goals and priorities for the patient day each year, I draw from my own experiences as well as relying heavily on feedback from and conversations with other patients. The number one priority for the event has and will always be the single ventricle patient community and their needs to live their best quality of life. We like to think of the patient day as “building strength through numbers.” Not only referring to building data within the Fontan Registry, but also building strength within in ourselves and the community as we come together as one.
How has Single Ventricle Patient Day impacted you?
The greatest impact for me has come from watching individuals, who have never met another person “like them” before, meet and feel understood for the first time. I was not able to have that experience until my 20s, so being able to provide that for others through the patient day has been one of the best moments of my life. I grew up feeling different and incredibly anxious trying to blindly navigate understanding how to “do life” and plan when I had no idea what to expect from my health. I felt trapped in a fight or flight response more often than not. This event has made me realize and understand that those feelings I had (and still have) are valid and common. Being able to openly express what I am feeling in a non-judgmental environment where you can look around and see everyone nodding their heads in agreement with you has an indescribable impact. My life has been made exponentially better from this day and the interactions I get to have with others.
Why should others consider participating in Single Ventricle Patient Day?
One of the most difficult periods of the single ventricle journey is throughout the transition time between pediatric and adult care. This has been a heavy topic within the CHD community as a whole for a long time. Whether you are older and already in ACHD care and never felt like you had a true transitional care period (like myself!), are right in the middle of it, or are just beginning the transitional care bridge, there is something for you at the patient day.
We want to prioritize making resources, tools and information available to all participants that directly improve quality of life at any stage of the single ventricle journey; providing support for individuals with Fontan physiology and those who are post-transplant. Each session will bring perspectives from both patient and clinician to give a more holistic view on each topic. Our goal by providing two perspectives on each topic is to allow for more robust conversations and the opportunity to learn from one other. We cannot move forward identifying quality improvements in care without collaboration. Not everyone has had the same experiences and we want to make sure each voice is heard. Additionally, the connection and opportunity to make lifelong connections is unmatched.