Posts by Paula Miller

We have had dozens of bloggers since this blog began who have been so open with their stories. If you are interested in blogging, too, we'd love to hear from you. Please email info@achaheart.org.

« View all authors

A Message to Jimmy Kimmel and His Family

by Paula Miller on Wednesday, May 03, 2017

By now we’re sure you’ve seen the news about Jimmy Kimmel’s son, who was born on April 21 with a congenital heart defect. The message we shared below on Facebook to Jimmy and his family is from ACHA’s Senior Education Manager Paula Miller.

Read more

It's Heart Month!

by Paula Miller on Thursday, Feb 02, 2017

Did you know that one out of 100 people have congenital heart disease (CHD) - meaning that when they are born they have something structurally wrong with their heart. It has nothing to do with diet or smoking or weight. For me, it was four different defects. Rolled into one, it’s called Tetralogy of Fallot. When I was born there was no surgery and my chances to live was very low. I am lucky and I did eventually have surgery (in fact three of them so far). BUT I will never be cured.

Read more

Summer Vacation: Tips for Traveling with CHD

by Paula Miller on Monday, May 23, 2016

Memorial Day signals the start of summer and for many of us, traveling for vacation or to visit family. We look forward to it all year long, particularly after the long cold winter some of us have had this year.

Read more

Balancing Parenting & Congenital Heart Disease

by Paula Miller on Thursday, May 05, 2016

A key issue in parenting when you have congenital heart disease (CHD) is being able to balance the day-to-day demands of being a parent and living with CHD. 

Some days it may be hard to figure out who to put first – your child or yourself.  However as hard as it may be, it’s important to take care of your own physical and emotional needs first. As a parent this may not sound “right,” but everyone will benefit in the long run if you are in better health and have more energy.

Read more

Announcing Our Updated Clinic Directory

by Paula Miller on Thursday, Oct 22, 2015

I’m excited to share that the ACHA/ISACHD Adult Congenital Heart Disease (ACHD) Clinic Directory has been updated with full 2014 data! We’ve also added several new ACHD programs to our listings. All participants completed the 2014 ACHA/ISACHD ACHD clinic survey, providing us with the most recently available full years’ worth of data.

Read more

What’s Important to Patients?

by Paula Miller on Tuesday, Aug 18, 2015

Over the past year, as a representative of ACHA, I have had the privilege of sitting on the Patient Engagement Council (PEC) of the Patient Outcomes Research to Advance Learning (PORTAL) clinical data research network, which is funded by the Patient-Centered Outcomes Research Institute (PCORI). There are 11 research centers in this network that is made up of four health delivery systems: Kaiser Permanente, Group Health Cooperative, Health Partners and Denver Health.

Read more

The Aging CHD Patient: The Facts, Part 2

by Paula Miller on Friday, Jun 12, 2015

As I wrote in the first part of this post, talking about heart failure brings up a topic that is seldom discussed in the ACHD world—end of life (EOL) care. Do ACHD patients want to discuss EOL? According to Dr. James Downar, they do.

Read more

The Aging CHD Patient: The Facts, Part 1

by Paula Miller on Wednesday, Jun 10, 2015

I was fortunate enough to be among hundreds of ACHD specialists, nurses and advocates who gathered in Toronto last week for the 25th International Symposium on Adult Congenital Heart Disease. Of particular interest was the one-day symposium on heart failure that covered all aspects of this evolving challenge in the rapidly-growing ACHD population.

Are you aware that as the CHD population graciously ages into adulthood, heart failure is the leading cause of cardiovascular death in adults with CHD?

Read more

Thanking Our CHD Doctors

by Paula Miller on Monday, Mar 31, 2014

This past weekend I had the privilege of representing ACHA at meetings of congenital heart healthcare providers that were held during the American College of Cardiology (ACC) Scientific Sessions in Washington, D.C. I am in awe of all that this amazing group of doctors, both pediatric and adult congenital cardiologists, do to make sure we, congenital heart patients, get what we deserve – the very best care.

Read more

In Front of the Fish Tank: A Life-Changing Encounter

by Paula Miller on Wednesday, Oct 30, 2013

In reality, the advent of the internet and what I recall as an AOL chat room was my initial introduction to ACHA. It was in late 1998 or 1999 and like so many adults living with congenital heart disease (CHD), I was looking for someone like myself. I knew I couldn’t be the only one alive who was born with the birth defect. There had to be someone out there who understood me.

Two of the young people I “chatted” with were Karen Klein McNulty and Anthony Cordaro, Jr. They, along with Bonnie Paulsen, Kimberly Ochs, Mary Kay Klein (Karen’s mother), and Tony Cordaro (Anthony’s dad), were the founding board members of ACHA. What a vision they had! And what a turn my life was about to take!

Read more

Building Relationships

by Paula Miller on Monday, Feb 11, 2013

Valentine’s Day is a day for relationships—most often with people you love, like your parents, your significant other, your siblings, and your friends. It’s a day of chocolates and flowers. Yet for those of us with CHD, building relationships outside of those we naturally love is an important aspect of our life.

Who else is as important as those I love, you may ask? As an adult with CHD, I think my relationship with my ACHD healthcare team and with ACHA are—but like many, these are relationships I sometimes take for granted and don’t always work to maintain.

Read more

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.