Posts 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.

It is life-affirming to know you can do things you haven’t been able to do in years. Four months after my last surgery I ran a 5-mile Thanksgiving race. After 10 months, I was able to spend the entire day walking around and advocating with ACHA in Washington, D.C.

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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.

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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.

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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.

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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.

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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.

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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.

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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 Ask.com, 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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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