Home, or is it?

This is the second time I came home from a bike ride across the United States. This time is much better actually. I have a home, a dog, a car, a resume. Last time, my brother and I had to rent a car since the car he gifted me, broke down in the middle of the desert. I’d say i’m in an actual great place.

I was laid off by my employer, I ended a long relationship and decided to be a single person. Beginning a search to find out who I am. I am 34 and almost 2 years with a different heart. I’ve spent the last couple of years, listening and following the prognosis to a T. This is the third time, I’ve built myself back to “normal”. This one is actually the most normal I’ve ever felt as an adult.

As a healthy adult, I need to be able to make the best decisions, in the best interest and perspective as ME. Not seeking or receiving input whatsoever from anyone other than who I chose to ask. I’ve worked really hard to return home, or normal.

I am not really normal. Not many people would be excited to be unemployed and recently going full time into creating the career and life, I have been fighting and working for my entire life, to call mine.

Takes the Cake

I’ve been through a good amount of shit in my life. I’ve started death in the face a few times. I’ve had a significant amount of uncertainties. I am officially ranking this current experience as the hardest I’ve ever felt. The most powerLESS. The least amount of control I’ve never had. I mean chemo is pretty fucking bad. The worst in regards of treatments, or in the idea of a solution, it is absolute torture. However, that came with a schedule. I knew when it would be, I knew how long it would be for and when it would be finished. If I survived each and every day of chemo, that was my way of measuring time. Having the heart attack, was sudden and out of nowhere. The time frame of that process was quick. If medication didn’t work, we need to implant the LVAD and remove that massive clot from your heart. Friday would be the day of surgery to get the LVAD. 

This current process of staying in the hospital and being on the heart transplant list in my current condition, is fucked. As I’ve already expressed, my heart already drops whenever the door opens for the last 28 days. They transferred me here to UCSD to treat my high LDH level (the clot in the pump) and eventually receive the heart transplant. Having the complications of my heart pump, allowed them to list me on the heart transplant list as a 1-A for 30 days. Now my LDH level is constantly decreasing, and my condition is constantly improving , means that the clot that has been in my heart pump, is almost gone. This also acts as a double edged sword. With my condition improving and the clot dissolving, I will lose my 1-A level once the 30 days is up (in 4 days). So pretty much if I don’t get a heart in the next few days, it could be a much longer while until I receive one. The constant mind fucks that I’ve experienced in the past 28 days have been unbelievable. I am over them. I am literally to the point of not knowing what I would prefer; receiving the new heart in the next few days, or be discharged and then wait at home for that call. My brain is fried. I am done thinking. Oh yeah and my 33rd birthday is  February 21st, what do I want to do? HA!

Satisfactory Heart

It is 18 days since I was transferred to UCSD Sulpizio Cardiovascular Center. Every morning about 9am, I receive a visit from my cardiologist. This past Friday, he came by and told me they received an offer for a heart for me. They said it was a satisfactory heart. It wasn't to the quality and condition they are looking for. They passed. 

It is ABSOLUTELY CRAZY to me, that my life has gotten to this point. I went from finally getting used to the LVAD and the insanity of being connected to a constant power source and walking around with a cord, to being admitted for over two weeks awaiting a new heart. 

Damn the times have changed just a bit. I had a few tough days last week. I spent a few days very quiet. Staying in my head, wondering why I am here. Sad, that I am still here. I am a stubborn man. I know this. I am here because I have a blood clot in my heart pump. The medication that I need to constantly be on, is only available in IV drip and I am at risk for a stroke if I am not at a level to come off of that medication. 

Physically, I am walking constantly. I have no issues getting in and out of bed. I am using the restroom without help. Missy brought my LVAD shower gear and the other day, I had a shower. Showers, are absolutely amazing. They can be a frustrating procedure, but they are such a pleasure. I have them about 1x a week. I am grateful to have those couple minutes to myself and just enjoy. (See below for shower clips).

Mentally, I am great. I am overall, feeling great. I have been doing my best to prepare myself mentally for this surgery. There is no schedule. No set date. No prep. It can happen at ANY minute. I can be on my daily walk and the doctors come up to bring me to the operating room. I try not to do too much planning. This is my new routine. This is my new life.

It's Monday, be grateful for your Monday. You are subconsciously experiencing your day. You are in your routine. It is so crazy how it can all change without your consent. Enjoy.

Currently Listening to: Explosions in the Sky - Warrior