Home / 2019 / My Mixed Emotions

My Mixed Emotions

Friday, January 04, 2019

By Robert Grabel

Hey, I just became I bionic. Move over, Six Million Dollar Man…

The above is me being funny. I was told humor is one of the best ways to deal with the mixed emotions that can hit you when you’re fitted for an ICD. Sometimes it works. Sometimes not so much. Mainly, the humor is for me. It’s a good distraction from thinking that I now have an incredible piece of technology near my heart that’s helping me live. Speaking of mixed emotions, that’s a big part of the recovery process. I’m beyond grateful to be here (yes—here and alive!).

After having open heart surgery 44 years ago, I thought I was done being a heart patient. Then, over the last four years, I’ve been surprised to learn of my need for valve replacement surgery and now this. Both experiences resulted from “happy accidents.” The need for valve replacement came up when I switched from a general to a very thorough congenital cardiologist. The need for an ICD came up literally as I was waiting to be taken for an electrophysical study of the heart and ablation. The doctors saw my typically low heart rate falling into the 20s. They were clear that an ICD combo pacemaker and defibrillator protected me on the bottom and top end (they’d seen a few instances of ventricular tachycardia, hence the study).

Besides feeling grateful, there were other emotions. Frustration and anger: How dare you tell me I need this thing? I’ve run tons of marathons and other races, 100-mile bike rides and triathlons and now I need this to keep me going? Fear: What if they hadn’t seen my low heart rate? What if the ICD fails or falters? What if, what if, etc. And finally, sadness and even a little self-pity crept in. Why me? Why now? And that was all in the first hour I was home! (See, there’s that humor again.)

Here’s the thing. I’m not anywhere close to answers on the above. What I have done over the last few weeks has been a helpful combination of walking, talking and sharing. I am fortunate to be connected to several communities of like-minded individuals that also have CHD. Their words have been incredibly helpful. There have been tough moments as well as many filled with joy, acceptance and clarity. If there is a perfect formula for accepting that I’m a heart patient for life, I haven’t found it. What I can recommend is the following:

Give it time (and maybe a list): So far, no two days of recovery have been alike. Hearing from others, this is pretty normal. There are ups and downs. My first day home started off great, deteriorated to horrible and then got better by the end. The next started off a bit tough—couldn’t get myself in gear easily. It got better as the day went on. I was able to focus a bit more. By the third day home I was able to start thinking and even writing. I found that starting each day with a simple list—no more than three to five to do’s—got me moving in the right direction. I accomplish a bit more every day.

Share with people: While I don’t want my identity to become “that heart patient,” I found myself sharing my experience quite a bit. And it helped. The more I talked, the more I learned, felt better and was even able to help others who had gone through the same thing. Talking to others gave me valuable perspective, particularly learning that they had gone on to live their lives as fully as before. People want to be engaged and they want to help. Let them.

Be grateful: I mentioned this but it can’t be said enough. We live in an age of amazing, life-saving science and technology. The simple fact that I and others can get an ICD and live our lives to the fullest is nothing short of miraculous. While I’m not religious, I do spend five to 10 minutes a day meditating on gratitude and it’s moved me to a better place.

The above probably goes for most procedures related to CHD and if it helps you, I'm glad. As for me, I'm still learning and look forward to sharing more.


Add yours below.


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.

Connect with ACHA

Join us in our mission to empower the congenital heart disease community by advancing access to resources and specialized care that improve patient-centered outcomes.

Enter your name, email and state to get started. If you choose to, you can provide more information to us in the next step for more tailored communications! We'll never, for any reason, share your personal information. Already get ACHA emails? We’ve got you! You do NOT need to fill out this form.

*By sharing your information, you consent to receiving emails from ACHA.

  • {{ m }}
{{ validation.firstError('basic.FirstName') }}
{{ validation.firstError('basic.LastName') }}
{{ validation.firstError('basic.Email') }}
{{ validation.firstError('basic.State') }}