• kari alejandre

Day 26

“The wound is the place where the Light enters you.”

― Rumi

When I drifted off into a most heavy, sedated sleep, duration tbd, I was just out. I mean, I have zero idea what was going down at that time. Aside from the surgery itself, where why was my mind? Where were my dreams? Where were my hearts? I have no recollection during this, or any other surgery. I have been told that with my first transplant, I described some lucid imagery of being “in the hands of God”, in a non-cliche way. 

Goodness. That is heavy. And also light. As the ocean is deep, and the galaxies are infinite, the understanding of my non-physical whereabouts is impossible. My body was on the table. Full of my squishy guts and magical organs, and Keely’s heart. One minute, her sweet heart is steady beating in my chest, and the next, a machine has taken over the work. Her work. She was my sturdy, strong engine for just over 20 years, and for herself for 13 years before that. I mourn this daily. Still. And it has been 9 months to the day since the exchange was made.

So when that heart was removed from the cozy nook of my protective chest, the machines were keeping me alive. And I wonder what kind of reconciliation was going down. “Hello, machines, I’m Kari’s soul, her being. We don’t have to get too close because you’re only gonna be here for a couple of hours. I don’t wanna get too attached, you-know-whatta-mean?”

There is an indescribable connection, and at the same time, a division, among the soul-body-heart-spirit. I just don’t get it. But that’s the “light” part: I don’t need to get it. I just know it is true. And I know that the disconnect creates a wound that there is no way to repair. Ever. But that’s ok, too. Because the wound is where the light comes in, as Rumi said (much more eloquently). And I am a grateful recipient of such wounds and such light. For a billion-gazillion reasons. 

So that’s how it is. Some things just don’t make sense and can’t be put into words. And that is how I have felt so often about this whole process. Going into my second transplant, I was very hopeful that I would have a swift recovery, much like my first. But I was 19 then, and was almost 40 at the time of the second. In so many ways, it couldn’t have been more different than the first. And I think I am still trying to reconcile that. To stop blaming myself in some convoluted way. It was not my fault that I got heart disease at 16. It was nothing I did. Nor was it my fault that I ended up needing a heart transplant at 19, had a heart attack at 38, or bypass and second transplant at 39. I did not sink the Titanic, either. I think it had to do with my expectation and disappointment of how things were when I awoke from the surgery.

I had imagined going in, that I would wake up smiling back at my beautiful husband. Of course, that would be after I had the gagging tug of war with my intubation. I struggled with this after bypass. I was awake enough to fight it and try to pull it out, but not awake enough to have it removed. I had to be restrained. If had been in a better mental state, I might have been a little embarrassed about that. But this isn’t how I woke up from this surgery. I did wake up with the intubation, but it was spotty for a while after that. I’m still piecing it together. 

From what I’ve gathered, I didn’t wake up for a few days, because they had to go back in. Thankfully they didn’t have to go through my sternum like expected, but went right above my belly button. I had a lot of bleeding, and it started pooling up around my heart and causing pressure. So they took care of that. Among the list of things that don’t usually go wrong, but can, and did, I was unable to have that first lovely ice chip and sip of water, because I was choking on my own saliva. I also couldn’t speak above a whisper. I had vocal chord paralyzation. This can happen any time, but I had been intubated many, many times in the past few months between kidney stone surgery and bypass etc. There was no guarantee that my voice or ability to swallow would ever come back.

I was also in a lot of pain. But that is pretty standard. The awesome nurses and docs helped to manage that pretty early on. I began hallucinating, which I knew to expect, and had warned my husband. It was quite magical, to be honest. Pretty much a sparkly fairy village with lots of crystal spider webs and smiling ants and such. I am grateful that the images weren’t frightening. They definitely weren’t more frightening than trying to get out of bed and walk for the first time. Been there, done it, lived to tell the story, obviously. The thing that was hardest though, was that I couldn’t eat or drink still. They had someone come check my swallow and I would aspirate every time. And it hurt like crazy to cough and choke on all that mess. So because I am so small, and unable to eat, I was losing weight quickly. They had to put a tube down my nose to keep me fed. It was an absolute nightmare. Some people can tolerate it, but I could not. It triggered my gag reflect around the clock. I was just gagging. All the time. And it was incredibly painful and depressing. 

I was improving in other ways, but that feeding tube sure tanked me. Sadly, my heart was struggling a little too. I had some weakness on the right side. The gave me some hard meds to try to perk it up. After many more days in the surgical ICU, i finally got to go “up to the floor”. The floor is a good sign that you’re healing and don’t need quite the monitoring as before. I felt a little more relieved to be on the mend enough to go up there. Looked forward to seeing familiar faces, too. I am so grateful for the nursing staff who helped me all along the way. It was a huge help to have them again. 

I ended up getting a feeding tube in my stomach instead of the nose. I fought (pretty dramatically) to get that. I’m glad I did. It was a risk because it was a big surgery. I HATED that thing, but it was SOOSOSOOSOSOo much better than the other. I was still unable to take anything orally but a couple ice chips and everything else went into my stomach (PEG tube). My voice had only slightly improved to just a louder whisper. I tried not to think about if I would ever be able to eat or drink or speak (or sing) again. I was still rather out of sorts, and I certainly wasn’t myself. I wasn’t thinking that all of these wounds would be beautiful soon. I couldn’t see that far ahead. I had the fight in me, but I was truly just trying to make it moment to moment. I would get anxious every time the cardiac rehab folks (who I LOVE) would come to make me walk. It felt impossible. And then medicine times were still a nightmare. I was hanging on, but had more discouragement than I’ve ever really encountered. And naturally that made me more so. Wondering when I would be me again. And feeling guilty for sounding ungrateful. 

It feels okay to say these things now. Because I’m human. And I was a hurting human. And while I was incredibly grateful to be alive and have this new heart, I had not even begun the process of mourning what I had lost in Keely and myself during this difficult time. I didn’t recognize my spirit. I missed part of myself. And I knew I would still have more work ahead than I ever had in my whole life. But again, I had no choice. I was driven, even if just enough for the moment. 

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