Adult Congenital Heart Association

As some of you may know, my mom was born with a congenital heart condition which has required countless surgeries, procedures, and uncertainties throughout her life. My mom and family are beyond grateful for the privileges we hold in accessibility to health resources that make my moms life not only possible but also very full and enjoyable. However, COUNTLESS patients with congenital heart conditions do not share this same experience.

Due to a lack of resources and research about this condition, many patients have been misinformed, misdiagnosed, and are left without the knowledge needed in order to connect with appropriate cardiac care. While going through various health crises, there were many occasions that my mom felt she needed emotional support, someone else that understood her experience, who could help her navigate the many health challenges ahead of her- a resource at the time, she felt did not exist. That's when my mom found the Adult Congenital Heart Association where she was able to use her life experience in assisting the development of the Heart to Heart peer mentorship program. This program connects congenital patients and their family members with trained peers who provide emotional support, guidance, and resources that they would otherwise not have access to.

Due to COVID-19, the Adult Congenital Heart Association has had to cancel several fundraisers that has led to a loss of significant revenue. Donations are this non-profits main source of funding; without ACHA, countless patients will be suffering alone.

I will be running 65 miles in May, not only for my mom, but for all patients living with congenital heart disease and their families that are affected by it, especially within the time of COVID-19.

Any support that you are able to provide, financially or not, is greatly appreciated. If anybody has any questions on ACHA or more about what I will be doing in the month of May please feel free to message me. Thank you for being here and stay safe <3

I am a 1%'er:

Not the way you typically think though, I'm 1 of the 100 kids born today with a congenital heart defect. When I was born in 1982 the stats of survival were not so great and my parents were told to "not get too attached." But thanks to the medicine, technology, and advances in care at the time, kids like me have been fortunate to grow up and live full lives. However, that has created a new challenge in medicine, which is to monitor and treat adults with these pediatric defects. Thankfully, the Adult Congenital Heart Association (ACHA) exists and helps with research, outreach, and education that is needed to take these challenges head on.

 

The Challenge:

July 17th marks my 32nd anniversary since my first and only open heart surgery, a day that we celebrate in my family like a birthday, because in some ways that was the day we knew things were going to be fine for a while. And statistically speaking, I'm super fortunate to only have had to have one procedure in my life.

 

This year I'm going to repeat a challenge from two years ago, but instead of just doing it for me, I want to do it for all of the "kids" out there that will need the good work of the ACHA someday. So this Saturday July 17th (or Sunday July 18th) I'm going to jump onto my (indoor) bike and drop at least 33 miles (one for each year + one extra for good luck) - however - for every $100 over $3000 we raise I'll add another mile up to 50.

 

To make it interesting, I'll send a special thank you to the person who donates the most.

 

More information about Adult Congenital Heart Association:

The mission of the Adult Congenital Heart Association is to improve and extend the lives of the millions born with heart defects through education, advocacy and research. We do this through a wide and growing range of programs, services and activities. These include our National and Regional Conferences, accreditation program, educational materials, website, outreach and advocacy efforts, research program, and events to raise money and increase awareness.

Last week we lost an incredible person due to complications of a Congenital Heart defect. Nikki was so passionate about this organization and participated in the walk every year. For those of you who asked how we can help, please join me in making a difference and lets raise money to benefit the Adult Congenital Heart Association. ANY donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to all of us, especially Nikki.

in loving memory of Nicole Lichter ❤️

More information about Adult Congenital Heart Association: The mission of the Adult Congenital Heart Association (ACHA) is to improve and extend the lives of the millions born with heart defects through education, advocacy and research. We do this through a wide and growing range of programs, services and activities. These include our National and Regional Conferences, accreditation program, educational materials, website, outreach and advocacy efforts, research program, and events to raise money and increase awareness.

Family, Friends, and Colleagues,


On June 2nd, 2019, I will be joining members of my Penn Medicine care team for the Greater Philadelphia Walk for 1 in 100, a walk to benefit those battling congenital heart disease. I am asking for your support in helping me raise money for this good and very personal cause. All proceeds are being donated to the Adult Congenital Heart Association and are tax deductible.

For many of you it will come as a surprise that I was born with a serious congenital heart defect. This is because it has always been something I wore on the inside, and I was always hesitant to expose such a vulnerability. In essence, one of my heart valves developed only one cusp as opposed to three. This lead to the deterioration of the aortic valve, aorta, and the heart muscle. 

I've spent each year of my life in and out of the hospital, always bearing the news that things had gotten just a little bit worse. Then last Fall, I was informed that my condition had deteriorated to the point where my heart could no longer sustain functioning. At this point, surgery was imminent. On December 10, 2018, I endured the approximately 8-hour procedure that would change my life forever. In one operation my aortic valve, ascending aorta, and a segment of my aortic arch were replaced. My mitral valve was also repaired. I was on bypass for 139 minutes and in a state of deep hypothermic circulatory arrest for 15 minutes where I was actually clinically dead. I spent a couple days in the ICU with a breathing tube, about a week in the hospital, and several months at home undergoing an intensive rehab program. 

This story isn’t so much about the details of the procedure, though. It’s more about the multitude of life lessons that I was able to glean from it. Though the surgery was crushingly painful on both a physical and emotional level, I am so fortunate to have experienced it. It has afforded me a perspective on life most people will never know. It is cliché, but one fundamental life lesson I learned is that in times of true crisis you find out who is with you and who isn’t. This experience exposed a rich and profound love from family and friends. The lesson here, is that the community of people that you are surrounded by is your most invaluable asset. Invest in it and treasure it – because in the end, it's all you'll have – and in the present, it's all that will provide you with the truest sense of purpose.

That is why I am so thankful for each and every one of you. I am happy to report that I am well and fully recovered from the ordeal. 

Remember that life breaks all of us, and it is how you pick up the pieces in times of hardship that defines character. Work hard, love deeply, express yourself, and for God sakes don’t take yourself too seriously.

Thank you so very much,

Michael