The Feisty Fontan

Over the course of my adult life, June has not always been very nice to me. I don’t have the best track record with avoiding hospitals in June.

In college, I started getting severe atrial fibrillation in June and spent almost six weeks in the hospital as my medical team tried medication after medication to control my A-Fib. A few years later, I got pacemaker #3 on an unplanned basis in June.

Which brings us to today……June 15^th, My Suckiversary.

My 5^th pacemaker, Johnny 5, was implanted four years ago today. Which should be a good thing; except this device was implanted after an air ambulance ride that I would spend the next eighteen months fighting with my insurance about. A device that was implanted after six days spent in the hospital, unmedicated and unpaced, waiting for my then doctor to come back from France and decide how she wanted to proceed. Maybe she wanted to try a different model pacemaker? Maybe go ahead and replace my almost thirty-year-old lead? Nope, I wasted six days for her to give me the same type of device on my original lead.

Then two years ago today started the hospitalization that would result in a ten-day hospital stay, seven of those spent in the Cardiac ICU. The hospital stay where I would officially be diagnosed with Protein Losing Enteropathy and heart failure. The hospital stay where my ex-husband realized the “Good Heart Husband” mask he wore in public was too heavy for him to keep wearing. The hospital stay that would be the catalyst to two years of several of the biggest life changes I have had.

While I call June 15^th , my Suckiversary and always will, because I’m a smartass like that, I am thankful for the sucky hospital stay that ended on June 15^th four years ago and for the sucky hospital stay that began on June 15^th two years ago.

Fighting with the air ambulance company and my insurance was one of the most frustrating and anger inducing experiences of my life. I would not wish that struggle on anyone. (Someday I’ll need to write a blog post about that whole experience and how I basically bought a helicopter.) But that fight taught me the importance of advocating for myself. It taught me the importance of knowing what information is in my medical record. It taught how to organize and document all the paperwork related to my medical conditions. These skills have made me a more educated and more engaged patient, and a better personal advocate.  I now read thru every single test result and lab report and I can tell you all about the trends in my potassium and albumin levels. When my disability lawyer needs documentation from me, I know exactly where it is and can get it to him in less than thirty minutes.

As far as my hospitalization from two years ago, if you’ve read my blog for any period of time you know how grateful I am for all the life changes and happiness that followed that hospitalization. However, even if I take my new husband and step kids out of the equation, I would still be grateful for that hospitalization. That hospitalization was a wake-up call that saved my life, and it saved it beyond just the medical way. In the year before that hospitalization I was so unhappy. Unhappy all the way down to my core. Unhappy in a way where I didn’t really care if I lived or died. I was in a marriage that I desperately wanted out of but was too scared of my alcoholic narcissist husband to act. So, I hid in the only place I could find; my job. I worked every hour I could and traveled every chance I got. Working fourteen-hour days and spending overnights visiting my other locations was time I was away from home. I was Iucky that my job encouraged this type of workaholic behavior. But I was unhappy at work too. I was more stressed and exhausted that I had ever been. I knew that my work schedule and traveling was taking a serious toll on my body, but I didn’t care. If that hospitalization had not happened, I most likely would be dead. If my undiagnosed PLE hadn’t done it, then me giving absolute zero effs about my life would have.

So, I raise my glass of a non-alcoholic beverage that doesn’t exceed my daily fluid restriction to my Suckiversary! Thank you for the challenges that you’ve brought, the life lessons I desperately needed taught and for being the motivation for me being who I am today. However, I know its 2020 and the time is ripe for another fun Suckiversary event, but if I could manage to avoid the hospital today and even the rest of the month really, that would be great