The end of my rope

As most of you know, I had been in the hospital for almost a month starting mid-May.  Being in the hospital can be alarming and I know many are concerned because a Twitch community is more than just viewers.  We’re a tight knit community of deep connections that are very hard to find irl, and because of that, I wanted to let you know what is happening with me. I know this because if something was happening to you, I’d definitely want to know.

If you have been around my streams for a while, you’ll know I have a heart/lung disease called pulmonary arterial hypertension caused by a ventricular septal defect in my heart I was born with.  It’s a chronic condition that keeps my O2 levels in the low 80’s to low 90’s which makes simple tasks very difficult for me.  I’m on three intense medications as well as two diuretics.  This has been my norm since the late 2000’s.

Last month in mid-May, I began coughing up blood from my lungs.  I know it’s from my lungs because I have coughed up blood before from my lungs and know how it feels.  It feels fucked up, like this shouldn’t be happening.  It usually happens when I skip meds accidentally.  This time was a bit different because I coughed up much more blood than I ever had.  In the past, I have gone to the ER because of coughing blood, but it’s always a short stay as they say there isn’t much they can do.  I almost didn’t go this time, but decided to push myself to go to the ER since it was more blood than usual.  

When they saw me at the ER, they actually weren’t concerned about the coughing of blood (a little, but it was kind of the same thing; what can they do).  They were more concerned with my very low heart rate in the low 40’s.  They decided to transfer me to my hospital where my cardiologist is from as this hospital specializes in my condition.  When I got there, I was put in the ICU and given EKG’s and seen by a couple of teams of doctors.  They noticed that the P-wave of my heart rhythm wasn’t where it was supposed to be and that the top part of my heart wasn’t beating with the bottom part of my heart.  They diagnosed me with third-degree heart block.  I didn’t really know what that meant, so the way they described it to me is that the heart has 3 fail safes if the electrical component of the heart (the part of your heart that makes it beat) fails.  I was on the 3rd fail safe, the last one, and that if my heart is pushed too hard, it had no other way to beat and I would die.

As you can imagine, this didn’t sit well with me.  I know my condition is serious, but I manage it and do ok I think.  It’s hard to hear you’re at the end of your rope.  They told my at the time my only option was to get a pacemaker (a pacemaker is a device that is implanted on the heart to ensure it beats correctly).  It took a couple days for the electrical heart team to discuss my case (the way things are done in hospitals is that the team of “experts” will have a “conference” about your case and discuss solutions, complications, and a plan to move the patient forward, so sometimes you are waiting days until they meet). After they discussed my case, they realized that putting a pacemaker in me is very risky and complicated.  The leads (electrical wires) from the pacemaker that go into my heart will be close to the hole I still have in my heart and the leads are known to make blood clots.  For a normal person, that’s fine, but for me, if one of the clots passes through my hole to the left side of my heart, it will go to my brain and cause a stroke.  They tried to make another plan, but it was just as risky.  They also said, the only benefit of a pacemaker was that my heart condition would rise to second-degree heart block, which would mean I’m further away from death, but I would still be in danger of heart failure in the future and I also still have tremendous pressure in my lungs, as my lung pressures are only getting worse and at a fast rate, even with medication.  A pulmonologist doctor explained all this to me, then said, “If it was my relative who had your condition, I would recommend a heart/lung transplant.  That’s what you should get.”

Ever since I was diagnosed with my condition, it was always made clear to me that the end game would be a heart/lung transplant, but no one really knew when that would be.  I always imagined this to be in my 60’s or something, sometime so far off, I didn’t really need to think about it.  The processing of what this doctor was telling brought up a conversation I was having with my mother a couple months ago.  We were having a deep conversation about how we need to be there for each other and my condition was brought up.  She said through tears, “I remember after your surgery (when you were 5), the doctors told me if you didn’t get a 2nd surgery, you wouldn’t live to 40.  But look at you now.  You made it.” She seemed happy when she said this, but I was anything but.  It was very hard for my brain to understand what my mother was saying.  She was TOLD I wouldn’t live past 40 and SHE NEVER TOLD ME?  I’m forty-fucking three.  I feel like that is information I would have liked to have known AT LEAST like 10 years ago.  I love my mother, but she is not the best at pushing past her fear and pain and telling me what I need to know.  I have done a lot of work on this in therapy and am at a place where I’m more understanding and forgiving towards my mom.  But it just makes me feel like I need to weather this storm more alone.  Like she cannot follow.  But that’s for another unofficial blog.

Remembering what my mom told me and what the doctor was telling me.  Even though I felt a wave of fear, there were voices in my head saying, isn’t this extreme?  Do we really have to?  Are you SURE?  I’m gonna need you to run that back.  I was also acutely aware that the core of my being was like, yes, this is the right time.  As if it was saying, haven’t you been paying attention to the signs?  You not being able to do your regular ass shit like teach or stream, the shit your mom said to you, the more coughing of blood, your depleting O2 and energy levels?  So I just nodded at the doctor and said OK.

I feel like in the back of my head, I've only half accepted that I am going to have a heart/lung transplant. I think that is all I can process at the moment to move forward. I feel like I'll meet the other half once I'm on the list and they call me to get down to the hospital to prep me for surgery. My heart drops and I become a bit frozen in fear when I think of my future self having to go through that. I can only prepare myself the best I can right now for her. I don't think there is much I can do right now to make it emotionally better for myself later. The statistics are the statistics. I'm a mathematician. I know the survival rates. I know the after care survival rates. I know the risks. My life is currently very hard and I know after surgery, my life will still be hard. But truth be known, if there is a chance for me to feel normal. To walk around and not feel foggy, like I'm in a haze, like I can barely breathe, like I have to pretend I'm fine and look normal as to not let the people around me feel bad for me, not to feel my heart beat out of my chest by just picking something off the ground wondering if I'm going to pass out, not seeing my lips and fingertips turn blue knowing I'm tearing up my insides by just walking across the street, I would take that chance without even a thought. I know I'm going through this surgery and this journey and there really isn't a choice. I just hope I survive this choice.

Right now, I'm maintaining my physical health by preserving my energy while keeping it still strong. I'm also thinking about the well being of my spirit and emotions. This is where streaming falls in for me. Even though I can be tired, I still want to make time for streaming and connecting. I get sad and feel aimless without it to be honest. So much of me lives in the connections that I have with gaming and those who I connect with in gaming. I believe this is a vital component for me to keep my spirits up and to keep me strong. So thank you so much for being here.