Recent Entries
Summer Vacation: Tips for Traveling with CHD
How Do You Start Your Morning?
Balancing Parenting & Congenital Heart Disease
The First Five Years
My Journey to a Grateful Life
Now What?
Medical Home Sweet Home
Still Cliché’?
To My Village: Thank You
Education is Key in Spreading the Word about CHD


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.

By ACHA on 2/25/2016 10:33 AM

By Jon Ritchings, Jr.

One of the best things about living through open heart surgeries is all the new firsts you get to do afterwards. These are, of course, the same things you maybe were able to do in the past, but now you are doing them again for the first time post-surgery.

By ACHA on 12/1/2015 12:12 PM

By Jon Ritchings, Jr.

I’m graduating—and with that, I will end my school career. Soon I’ll be interviewing and then working at a new job. This has me thinking about the sense of loss or excitement we can feel as we transition from one part of life to the next.

As congenital heart defect patients we often make transitions in our lives. Sometimes it’s a slow transition as our heart function declines and our bodies tire. Other times it is in the opposite direction as through surgery, medications, and changes in lifestyle, we get healthier and are able to physically do more.

By ACHA on 8/3/2015 11:56 AM

By Jon Ritchings, Jr.

I’ve recently started dating a young lady who also has a congenital heart condition. Two weekends ago we were supposed to get together for a date; however, our plans were disrupted by CHD. For once it’s not me and my wonky heart that were acting up, instead it was her wonky heart.

By ACHA on 5/22/2015 11:08 AM

By Jon Ritchings, Jr.

I have a ton of friends. I get invites to concerts, dinners and outings all the time. However, I’ve noticed that some people shy away from you when you mention that you have a chronic illness. I don’t know if they are uncomfortable, just don’t want to get involved, or are heartless.

By ACHA on 3/2/2015 2:25 PM

By Jon Ritchings, Jr.

I want to write a little about persevering in the face of a challenge. For more than a decade, the biggest challenge in my life was living in congestive heart failure and getting myself heart healthy enough to have surgery and reverse it. I accomplished that a little over two years ago now and my life is pretty normal again.

When finding this out about me, many people often tell me they wish I didn’t have to go through that. Well, I’m glad I did. It has impacted my life in a major ways. In fact, that one decade-long battle and the stories of other CHD adults really taught me how to settle in for a fight and persevere.

By ACHA on 12/18/2014 11:50 AM

By Jon Ritchings, Jr.

Yesterday I had my first interview in a couple of years. It was for an internship in a medical office. One of the things I thought about was, do I mention my congenital heart disease?

When I was writing my resume for this position I struggled with adding things like my Facebook groups, social media experience, this blog, and my experience as a patient—to show I have had some contact with the medical community. If I did put this stuff on the resume, though, I would be saying, “Hey, guys! I have a physical defect that will cause lifelong issues.”

By ACHA on 10/28/2014 3:36 PM

By Jon Ritchings, Jr.

Stress. Stress! STRESS! It’s the bane of my existence these days.

I’m taking 15 credits at school this semester and am the president of a student club, plus am organizing a bake sale, playing in two ukulele groups, and teaching a ukulele class in two weeks to one of those groups. To say I’m busy is an understatement. I wake up every morning and start going over my list of things to do that day before I’m even out of bed.

By ACHA on 8/7/2014 12:43 PM

By Jon Ritchings, Jr.

I know this is a website for adults with congenital heart defects, but I read something over the weekend on my Facebook feed that made me angrier than I have been in a long time—a web link to a story about a baby who was barely two pounds that had recently had balloon valvuloplasty to fix pulmonary stenosis.

I know what you’re thinking, how can this guy be mad about a little girl who had lifesaving surgery? Let me tell you, when I started reading I was really psyched to hear about how well this little girl and her incredible surgeon did.

By ACHA on 6/19/2014 12:25 PM

By Jon Ritchings, Jr.

I am loving this summer. After an extremely brutal winter it’s been wonderful getting outside again. The winter cold forced me to give up my daily walks. I’ve worked hard nearly every day to get in even better shape than I was last year. Well, that and lose the 20 pounds I gained.

I’ve set two goals for myself that I intend to hit by the end of September. One is to be able to run the three miles that I currently walk every day. The other is to lose those 20 pounds I gained this past winter. I’ve tried to do this a few times since my last surgery. In the past I’ve gone at it full blast, changing my diet and adding a lot of exercise all at once. Usually I do well the first few weeks, losing a few pounds and feeling good about the changes. Then, life gets in the way and the whole thing falls apart within a few days.

By ACHA on 4/23/2014 12:08 PM

By Jon Ritchings, Jr.

I find little life lessons everywhere. After my last surgery I made the decision to change careers and go back to school. One of the classes I’m taking is an office keyboarding class. The teacher for that class is a runner and about two-thirds of the way through the semester she talked to us about what the rest of the semester would hold.

By ACHA on 2/18/2014 8:42 AM

By Jon Ritchings, Jr.

It never fails to amaze me how happy a great visit to my ACHD doctor can make me. For me it’s like winning the lottery. There are a bunch of mixed emotions that crash together inside me. Elation at the good news. The drastic change from slight anxiousness to full-on relief. Pride in the fact that I did everything I was asked to do—and more—to get healthier. And definitely gratitude to my entire cardiac team for repairing all my heart’s broken bits and the guidance on what I should do to get healthy.

By ACHA on 12/18/2013 3:10 PM

By Jon Ritchings, Jr.

What to expect at a regular visit? That is something that I've been asked before. It's what causes a lot of anxiousness for many CHDers. For me, the answer is simple—anything.

At the age of 16 is when that trend started. I went in for a regular cardiac visit and ended up in the hospital with atrial flutter. Later on, this trend would continue. After being diagnosed with ventricular tachycardia I went to meet my electrophysiologist for the first time. He suggested that I hang around and meet with a cardiologist and a pediatric cardiologist who does some adult CHD stuff.

By ACHA on 11/14/2013 3:06 PM

By Jon Ritchings, Jr.

Discipline. I think that society as a whole lacks it—there seems to be a laissez-faire attitude in general. A do-as-I-want-with-no-worry-about-the-consequences way of life.

Luckily, I am the opposite. In fact, I've been disciplined most of my adult life without even realizing it. I had to have discipline in order to live a normal life.

By ACHA on 9/27/2013 1:52 PM

By Jon Ritchings, Jr.

Last night after a day of 16 hours spent on my feet, I went to bed and lo and behold, for the first time in more than a year I had some edema in my left ankle. I tell you this because I know exactly why it happened.

Over the summer I've put on about 10 pounds. I haven't been exercising regularly or eating very well. Seems simple, but I think it can happen to anybody. You see, I lost my focus on my health. Often in today's world of go-go-go, we lose focus on the things important to us. It could be anything—family, success, or in my case, health.

By ACHA on 8/30/2013 10:19 AM

By Jon Ritchings, Jr.

In this day and age, community has taken on a new meaning. Nearly everybody in the world is logged into the internet. Social media sites like Facebook and Twitter, as well as search engines like Google and, have made it possible for us to find and relate to others like ourselves, whatever that connection might be. In this instance, I'm talking about everyone whose life has been impacted by CHD.

By ACHA on 7/26/2013 10:12 AM

By Jon Ritchings, Jr.

I am grateful for my CHD. I know that isn't something you hear all the time, but it is true. Having a CHD has introduced me to two things that I may have never learned without living with a CHD.

The first is acceptance—the ability to take things and people at face value without judging. When I first went into heart failure, the disease spread so fast that I was forced to give up many of the things that I had loved to do, like canoeing, hiking, and weightlifting. Without these things in my life I was lost at first.

By ACHA on 6/24/2013 1:34 PM

By Jon Ritchings, Jr.

If any of you have ever talked to me about my experiences, you would find out pretty quickly that I am notorious in my local hospital for destroying or wearing out everything that they put in me. Case in point: I’ve never had a pacemaker last longer than four and a half years and I even smashed one and had to have it and all my leads removed and relocated due to infection. So last summer I got all new hardware, including a new lead run into my right atrium.

Well, I’ve been up to my old tricks. Sometime in the last three months I’ve managed to pull that lead free of the heart wall. So what does a person do when they destroy equipment? I laugh about it, make sure I’m not in immediate danger and then take care of the situation. There isn’t much else you can do, because worrying about it isn’t going to change anything.

By ACHA on 5/28/2013 3:10 PM

By Jon Ritchings, Jr.

Summer made a brief appearance here in New England and I was able to go out and grill. I love this time of year because it is so easy for us low sodium, low cholesterol, low-fat eaters to have such delicious meals without a whole lot of fuss. I thought I would share my ideas of why summer eating is so great for us CHDers.

By ACHA on 4/24/2013 12:56 PM

By Jon Ritchings, Jr.

I've been playing a lot of disc golf the last couple of weeks. Between the coach of the local high school team leading his kids through the middle of the course and interrupting play, the vandalism to the course, and the amount of garbage that people are leaving, it's given me pause to think about—why? I think it comes down to a lack of respect. All three of those things can be tied back to a lack of respect for the people who use the course on a regular basis. But, I don't want to talk about that. I want to talk about the lack of respect everyone sometimes shows for themselves.

By ACHA on 3/25/2013 10:58 AM

By Jon Ritchings, Jr.

A week ago we had Advocacy Day in Washington, D.C. This was my first time at this event and it definitely will not be my last. Two things really struck me about this annual event.

The first was being able to sit down with our representatives or their staff and tell our 30-second stories. It amazed me that as I spoke, you could see things click in their heads as they absorbed. Here it is, my 30-second story that I used:

By ACHA on 2/26/2013 10:55 AM

By Jon Ritchings, Jr.

In today’s post, I wanted to write about moving forward in a positive way and how we can do that; instead, I’m going to write about getting through tough times. I'm in the middle of one now, or at least what I think is one of the toughest things about living with CHD. You see, I'm about seven months post-op and I feel incredible. My energy is way up and I can run for more than a couple of hundred feet for the first time in years, but I can't do the things I want because I'm having pain in my sternum and ribs down the back of my left side. It happens any time I stretch my diaphragm and it is like a hot knife being stuck in me.

By ACHA on 1/17/2013 2:16 PM

By Jon Ritchings, Jr.

January first rolled around and we all made our New Year’s resolutions. Doesn't matter what it is or what our intentions were, it's been a couple of weeks and now your initial resolve is starting to weaken as obstacles are placed in your way. You see, when you started out and made your resolution, you didn't sit down and think about what might happen in your everyday life that would make it difficult to achieve your goal.

Think about it—for instance, if you decided to lose ten pounds or eat healthier, you weren’t thinking about that kid’s birthday party where they would be foisting ice cream and chocolate cake on you. So the question becomes, when faced with these obstacles, what are you going to do to overcome them? I have three ways to overcome these obstacles that I use. I'll give them to you in order of least favorite to most favorite.

By ACHA on 12/14/2012 12:53 PM

By Jon Ritchings, Jr.

Inspiration can mean different things to different people. It can be a picture, a movie, a poem, a person—well, really, anything that makes you want to do better. The only thing that can be said about inspiration is that everybody at some point needs it.

By ACHA on 11/8/2012 8:39 AM

By Jon Ritchings, Jr.

It's three months post-op for me and I'm starting to run. I don't run far—maybe 500 or 600 feet before my lungs feel like they are about to explode and my knees are screaming for me to stop. I'm out there, though, and I'm doing it and I'm getting a little better at it every day.

People now ask me, why? It's so hard on your body and you’re gasping for breath. Especially with a heart condition. For me, there are three reasons.

By ACHA on 10/8/2012 10:03 AM

By Jon Ritchings, Jr.

It’s been ten weeks since my last open heart surgery and I've had ups and downs. I was released only to end up in the hospital for another two-and-a-half weeks. Then I had a couple of bouts of withdrawal when I stopped the steroids they put me on. Here’s what I've learned from all of this: Perseverance is the key to recovery.

By ACHA on 9/4/2012 2:19 PM

By Jon Ritchings, Jr.

Note: read Part 1 of Jon’s post by clicking here.

The second thing that helps me at the hospital is to find things to do. Anything that takes your mind off the monotony of sitting in a hospital bed staring at the ceiling is going to help you get out of the hospital sooner. I'm not talking about watching TV, either. Most hospitals provide a personal TV with a few crappy cable networks but really, it's like a token way for them to occupy your time.

By ACHA on 8/31/2012 1:11 PM

By Jon Ritchings, Jr.

For those who do not know, I had cardiac surgery at the very end of July. It was fairly major in that it involved two valves and removing part of the right atrium, as well as some things to help eliminate some of my rhythm issues. Needless to say, I spent 10 days of recovery in the hospital and was discharged ahead of schedule. Twenty-four hours later I was in my local hospital with my regular cardiologist, conferencing with the original surgeon.

By ACHA on 7/11/2012 11:29 AM

By Jon Ritchings, Jr.

I know you won't be reading this blog post until July 11th, but I am writing this right now at the end of June. It is currently a Friday and today is my first full day of a ten-day vacation. I felt I needed this time away. You see, at the end of July, I will be having my third open heart surgery.

By ACHA on 6/14/2012 10:53 AM

By Jon Ritchings, Jr.

I am the father of a wonderful 21-year-old kid. I've raised him since he was two years old with some help from my parents and brothers along the way. He's seen me at my best and worst as I've dealt with my CHD.

When he was a little we used to go out and do all kinds of things together—kayaking, hiking, shooting and fishing. As he reached his teenage years my CHD began to take its toll on me. I developed CHF and slowly I was unable to do the things with him that we used to. We still spent time together going to movies or just hanging out but; he was a healthy active kid who needed activities.

By ACHA on 5/14/2012 1:10 PM

By Jon Ritchings, Jr.

I'm kind of a silly guy in that I live my life by moments. I do my best to live my life in the moment, trying to notice everything that is happening around me. It is how I live my life these days. I no longer concern myself with things I have done in the past. Many of those things I can't do anymore and dwelling on that accomplishes nothing except developing resentment for what I have lost.

By ACHA on 4/25/2012 11:52 AM

By Jon Ritchings, Jr.

I think of everything around us as a tool. As part of the CHD community, I know that technology is definitely a tool. Technology has allowed us access to new surgical techniques and devices that have allowed many of us to live longer, more productive lives.

Experience is also a tool. Simple trial and error has answered many questions for my generation and the ones that are coming up now.

By ACHA on 3/26/2012 2:07 PM

By Jon Ritchings, Jr.

A recent comment about faith on an online ACHD group I belong to got me thinking. I listen to people talk about faith—people in the CHD community, my regular community, the religious community for sure. I see a lot of people go to church, temple, synagogue, and pull out their prayer rug. If you ask them why, they tell you it is their faith. They do these things because they have faith in their religion, their religious leader or their particular religious scripture. They have faith, as if faith were an object. As if the person who belonged to the right religion had the real faith and everyone else’s faith was somehow counterfeit.

By ACHA on 2/28/2012 12:57 PM

By Jon Ritchings, Jr.

Let me tell you a little about my journey over the better part of this last decade. I have lived in congestive heart failure for almost 12 years. In that time I have been mostly able to lead a normal life. In fac,t I would go as far as to say I was more active in my life than many people that I know.

It hasn't all been peaches and cream, though. Eight years ago I was forced to leave work. I had numerous tests done and a new ICD put in due to episodes of V-Tach. During that time I found that my EF (ejection fraction) was only 15%. There was talk about the possibility of getting a transplant or maybe surgery.

By ACHA on 2/6/2012 1:24 PM

By Jon Ritchings, Jr.

February is Congenital Heart Disease Awareness Month—an important month for me and many of my friends. It’s our month. We get to bombard you with facts and statistics about CHD and you get to listen.

By ACHA on 12/29/2011 2:00 PM

By Jon Ritchings, Jr.

Living with a CHD is hard sometimes. We deal with all kinds of issues.

Often we are tired, sore and stressed about surgeries or procedures, in pain from those same surgeries or procedures, and recovering while knowing that everything we went through is just a patch and that we will have to have another procedure somewhere down the line. It's tough and at times feels impossible.

By ACHA on 12/5/2011 10:39 AM

By Jon Ritchings, Jr.

Waiting. We all do it. We wait in line at the grocery store, the department store and the DMV. But these are all ordinary types of waiting. What I’m talking about is waiting in limbo—that time many of us have experienced where we have seen our doctor, taken some tests and are now waiting for doctors to get together and confer about our issues and what the possible fixes might be.