My newest heart problem…

First of all, if you are reading this, I want to start by saying thank you for reading and supporting The Feisty Fontan.

If you are one of my thirteen blog subscribers, you may have noticed that I was pretty gung ho with my blog posts and then suddenly radio silence….I am not dead or even in the hospital again. Over the past few weeks, my whole life has been turned upside down and trying to write anything resembling humor or happiness has been impossible.

My heart is backwards. It is mostly man made. In the simplest terms, I really only have half of one. It has had words like “defective,” “damaged,” and “failure” used in reference to it. I didn’t think anything else could happen to it. Until it was shattered into a million tiny pieces.

Shortly after my recent hospital stay my husband of thirteen years decided that was the last time he ever wanted to sit with me in a hospital.  He told me that during my hospital stay when someone referred to him as my “caregiver” he wanted to scream and run away. He told me that he no longer wants to live his life being restricted by my limitations. He asked for a divorce.

A man that was once so proud of being a heart husband that he got a mended heart tattoo on his chest with a scar to match mine is walking away from thirteen years of marriage because I can no longer have a beer with him and because my oxygen tubing isn’t exactly sexy. A month after he posted on Facebook that I was amazing and his hero he was saying some of the most hurtful things I have ever had said to me. A man that I financially and emotionally supported for thirteen years while he got his PhD no longer has any use for me now that my income earning potential is uncertain.

I feel like, unbeknownst to me, I entered into our marriage with a punch card that was good for X number of doctor visits, X number of days in the hospital and X number of hours of love and support. My most recent hospital stay and health situation must have put so many holes in those punch cards that there was nothing left but scraps and dust.

I am fully aware that it takes a lot strength to love someone thru sickness. In my attempt to find the silver lining in everything, I am just glad he came to the realization that he didn’t have the strength now rather than even further down the road. If I ever do end up needing something like a heart and/or liver transplant, I want to go thru that with people that love and support me by my side, not someone that doesn’t understand the meaning of wedding vows.

Over the course of my life I have encountered far more people that ran and hid from my heart defect than those who have embraced it. He is not the first person to leave my life because dealing with my limitations was too much for them and I know he won’t be the last.

And while I am grieving this great loss, I also know that nothing I’ve encountered so far has diminished my fighting spirt or curtailed my feistiness and I will not let this be the thing that does that. However, for the time being I will be taking a break from my blog. My whole life has totally changed over the course of a few weeks. The laundry list of major decisions I have to make is longer than my arm. And again, I have nothing resembling humor or happiness to give right now.

I had a lot I wanted to say about life as an adult with a congenital heart defect. I wanted to share my story as a way to get a little more awareness and education out there in the world. I still want to do that and just like I focused on recovering from my recent health setbacks, I plan on focusing on recovering from this. I hope to resume my pursuit of humor and happiness. I have survived my heart defect, my surgery and have already lived about five times longer that it was ever predicted I would and I will survive this.

3 Comments

  1. Nancy Kim

    August 4, 2018 at 12:55 pm

    You are in my thoughts & prayers everyday.
    Our God is an Awesome God!
    He has always seen you through this difficulty. He will never leave you!

  2. Betty Kunkel

    August 6, 2018 at 6:17 am

    I am so sorry Beth. I send prayers for you and please know if there’s anything I can do please let me know. It’s difficult to understand what God’s plan is in this but never give up trusting that there is a greater future. I will also reach out to your momma, I’m sure she and your dad and brother are heart broken for you.

  3. Tracy

    August 9, 2018 at 12:59 pm

    Thinking of you. Unfortunately, sometimes people disappoint us terribly. You don’t need that negative energy around you. You are an amazing , special person who has overcome so much already, and your work is not done yet.

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