Our ACHA bloggers cover many topics relevant to the CHD community. 

Transplant During the Covid-19 Pandemic: Part Two

by Jodie Neukirch Elliott on Tuesday, May 11, 2021

I got home from my transplant in April and was so relieved. Yet COVID was still leading to changes that were unexpected. One of the things I came home with was a rollator, which is like a walker but with wheels. I needed to walk a half to a whole mile (cumulatively) a day, and we were lucky that April in North Carolina is beautiful.

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Transplant During the Covid-19 Pandemic: Part One

by Jodie Neukirch Elliott on Wednesday, Apr 28, 2021

I’m a first-time blogger for ACHA. I was born with Shone’s syndrome, went into heart failure at 23 after getting an artificial mitral valve, and was listed for transplant on my 37th birthday—February 28, 2020. While I had known for over a decade that I would need a heart transplant someday, I underestimated the effect that outside factors would have on my recovery.

The biggest outside factor? COVID-19.

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Strep-Heart: My Journey with Endocarditis - Part 2

by Carrie Rydin on Friday, Apr 09, 2021

In my first blog post, I wrote about my experience being diagnosed with endocarditis in 2019. You can read about it here.

What no one talks about, when you have a pacemaker or ICD (implanted cardioverter defibrillator) implanted, at least in my experience, is that living with technology in your body comes with liabilities. When I was diagnosed with endocarditis at 37 years old, I received a crash course on this. In my case, my leads needed to be removed because they were harboring harmful bacteria and removing them would not be easy.

My leads were 16 years old, putting me squarely in the “ancient” category of lead lifespan. This meant that extracting them from my heart came with a risk of tearing heart tissue during removal.

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Strep-Heart: My Journey with Endocarditis - Part 1

by Carrie Rydin on Wednesday, Mar 24, 2021

On a warm and windy day in August 2019, I am driving down the stretch of highway in Colorado that is perched on Green Mountain and overlooks the skyline of Denver. With the windows down and sunroof open so that I can feel the cooling breeze on my face and the back of my neck, I drive with purpose. My destination was determined by a phone call I received earlier in the day from my primary care doctor: "Go to the hospital and check yourself in—lab results indicate there is an infection in your blood." In this moment, I’m not worried... if anything, I am looking forward to the IV antibiotic waiting for me that will provide some relief from this awful fever.

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Diagnosed as an Adult: My Journey to ACHA

by Monisha Mitchell on Friday, Mar 12, 2021

I often talk about the moment I was lying on a procedure table with my cardiologist in my heart. I have spoken about the moment the room stirred. I asked what was wrong and Dr. H said, “You have a very special heart.” My reply was, “I told you I am fearfully and wonderfully made.” However, I have not shared the details of the gut-wrenching events that followed, or my saving grace, until now.

Later that day, Dr. H entered my room in the Critical Care Unit of the local hospital. I knew when he walked into the room that it wasn’t good news. He had a look of empathy that in 30 years with doctors of all kinds, in all situations, I have never seen.

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In the Older ACHD Population, Coordination of Care is Key

by Pankaj Madan, MD, MS on Wednesday, Mar 03, 2021

As an active and energetic 54-year-old, Mr. Trevino (whose name and certain details have been changed here for privacy) will likely chuckle at being a subject of discussion in this blog about congenital heart disease (CHD) in the geriatric population.

I met Mr. Trevino, a retired pharmacist, about two years ago when he presented with chest discomfort and was found to have a severely leaking pulmonic valve from a previously operated congenital pulmonic stenosis and blockages in his three coronary arteries supplying the heart. Surgery was advised to replace the leaky pulmonic valve, along with coronary artery bypass surgery.

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When You Meet Another with CHD, Part 2

by Jennifer Rogers on Wednesday, Feb 17, 2021

Hello! My name is Jennifer Rogers, and I have tetralogy of Fallot. I have been an ACHA blogger since 2018, and it has allowed me to meet many people like me, living with congenital heart disease. I believe highly in community and accountability, which is why I am so thankful to be part of this incredible organization. I really appreciate the opportunity to collaborate with Jared Gould, a fellow ACHA blogger, to discuss life with CHD and how our journeys have affected each other.

Jared was born with hypoplastic left heart syndrome. I read his series Pedaling the Pounds Off, and was inspired and motivated to stay active and be healthy. I reached out to him via Instagram in October 2020 to ask if we could talk one night. That conversation turned into friendship when we realized we shared the same feelings about our life experiences with CHD.

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When You Meet Another with CHD, Part 1

by Jared Gould on Sunday, Feb 07, 2021

Hi, my name is Jared Gould. Living with hypoplastic left heart syndrome, I enjoy opportunities to share information about my experiences with patients across the country. I started blogging for ACHA in July 2019 and since have met incredible people living with CHD. My blog series Pedaling the Pounds Off ended in early 2020, but I am now partnering with Jennifer Rogers, another ACHA blogger and friend, to write about issues facing CHD patients.

Jennifer was born with tetralogy of Fallot. We met virtually in October 2020 when out of nowhere I received a message from her on Instagram asking if we can connect. During our discussion, we discovered that we shared common views and experiences growing up with a heart condition. We even shared similar views on what it meant to be writing for ACHA and how we both questioned if we were the correct people to be sharing our stories.

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Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.