Day 7

It’s been 1 week since I was released from Swedish. Since the 27th, my life was forever changed. The heart attack was completely out of nowhere, but maybe I was just ignoring the signs.

It was probably a slow buildup from the 3 PICC lines I had starting at the end of 2022, until I had my last PICC pulled in August when I had the port placed. I’m pretty sure each line contributed to the heart attack. Each one most likely had a small clot on the end. When they pulled it, that clot didn’t come with, it found a new home. Just like before.

Clots have been a problem ever since my first PICC line. It’s always been a concern, but never really figured as to why they happen. Mayo tried running tests, but found nothing. I’m pretty sure it’s just being on Ig. I’ve clotted on both IVIg, and SCIg. So I don’t think it matters. I know Dr Sarid was concerned, but when I told him that, he liked my logic. I’ll just need to be on anti-coagulants for the rest of my life along side the IVIg. Just one of those things that I guess is an unexpected thing, but for me, it’s just par for the course.

It’s hard to really understand, grasp, or accept that I am 43. How the fuck did I pull the STEMI card from the Uno deck? Not only that, I drew almost every shitty card from this deck. I swear I would love some skip turns. Fuck I’ll take a reverse. As this “game” has gone on, I will admit it’s become harder and harder to play. It’s not easy by any means. From a physical, and now, an emotional standpoint. It feels like it’s become a high-stakes winner take all type of game.

I’ve lost a lot of things long the way. Didn’t lose my immune system, can’t lose something you’ve never had (pathetic dad joke I know).

In no particular order, I’ve lost all or lost most of:

My patience. With everything. The smallest things frustrate me to no end, and quickly I might add.

Time. All of my vacation time, and sick time. I’ve missed out on important things just because it was physically impossible.

A friend. Someone who I thought was a good friend. In the end, I didn’t realize they really weren’t.

Trust. In people, especially doctors. Don’t need to elaborate on this.

Dignity. Losing all my teeth in 2020 just added to it. It’s embarrassing that only have 6 teeth left.

Family. I lost my mom in 2012, wasn’t by choice. Fuck cancer. But at the same time, I walked away from my biological father at the end of 2020. I had enough of his narcissism, racism, abuse, and hatred. In 2021, during my 2nd visit to Mayo, my sister freaked out and just attacked me for no reason. Sorry but that’s the last time you’ll ever see me. She even tried to blame me for her actions. I shut them both out of my life. They don’t deserve me anymore.

Yes. I’ve lost a lot. But what have I kept, or gained?

Hope. I almost lost this this year, Venus & Athena my two savannahs, along with my wife kept me out of a dark place. Hopelessness isn’t a great place to be.

Advocation. Over the past 3 years, I’ve become a different person when it comes to advocating for myself with respect for my health, and dealing with difficult providers.

Humor. I’m still able to keep the sarcastic, funny side of myself. I’m still able to laugh. It’s one of my qualities that’s enabled me to look at the lighter side of things.

Love. For my wife. She has been my everything these past few years. She’s never quit. She’s been the most supportive and patient person with me as she’s watched me go through this every day.

Endurance. Being able to endure every day. In indescribable pain, every hour. As each new symptom came and worsened, I just pushed through it. Every surgery. Being able to just do my best at work, trying to not let this define me.

I truly am humbled, and thankful for those people still in my life, and want to be in it. The past 3 years has been extremely hard on my body, and my mind.

Hopefully more answers come this week since I’ll be seeing both Dr Lupo, and Hepworth. Hopefully between them, and infectious disease paying attention, we can throw this infection off a cliff, to never return.

Hopefully it’s a quiet weekend, and that I can just remain calm, and just relax. I feel the end of all this coming soon. It just needs to happen.