Mind the Gap

Sorry for not writing sooner, but wow, THAT didn't go as planned.

When we last talked (that's what I perceive us to be doing here by the way, just having the world's most one-sided chat, the longest first date ever), I had slapped on my customary brave face, twisted my hair into my pigtailed hospital hairdo and was about to cruise through my 3rd defib implantation with high spirits and my sense of humor intact. The third time would no doubt be the charm!

It's amazing how quickly you get accustomed to being in the hospital. After two full months of testing and procedures, it was just second nature to be in a hospital gown, sitting in a pre-op hospital bed. I mean, Derek didn't even have to take the day as a vacation day because he was able to sit on his laptop and work and he even left the pre-op room to take conference calls. So yeah, two weeks ago, everything was feeling very "routine" when during my pre-op prep, things got sort of interesting. 

We were shown an x-ray of my current defib in my chest and told that it was kind of in a weird place (because of course it was). Melissa, the surgeon, explained that my original surgeon in 2003 had truly done me a plastic surgery-type favor because he used a vertical incision, waaaay over to the left, where the scar could be easily covered by a bathing suit or bra strap, and that would allow for even the most plunging neckline. And yes, I do remember Dr. Lopez (my original surgeon) mentioning he was going to try to put it as far over as possible, I just didn't know that this was unusual because as per youzhe no one explained anything to me. 

But apparently most defibrillators or pacemakers are done with a 3-inch horizontal incision in a decidedly more noticeable area. They also are usually implanted in far older patients. I can remember friends in 2003 telling me just absolutely delightful stories about how they could actually see the little box under the skin on their grandmother's chests and I was HORRIFIED.

As I believe I've mentioned, I was only 37 years old at the time of my original implant and I was decidedly one of my cardiology group's youngest defib clients. And if I'm just being honest, low-cut tops were always kind of my thing. I've long had stupidly large breasts and it has never mattered what I wear, it always looks like I'm trying to draw attention to them, so I just go ahead and really draw attention to them. So, yeah. A visible scar-- or device!-- was never going to suit me and Dr. Lopez just instinctively got me. It's highly likely he saw me in a plunging neckline every time I was in the clinic. And one would sooner deface the Mona Lisa than destroy a decolletage like mine, right?

So Melissa and the Fellow assisting her that day had a challenge and a nice teaching moment not only based on the position of the device and how that position really stretched the lead attached to it-- but also, as we learned, because the new device was slightly larger than the old device. You see, there was a pocket of scar tissue that had formed around the old defib and the new defib needed to fit into that pocket... and well, the new device was basically trying to fit into the scar pocket equivalent of skinny jeans.  Still, eventually all of the consulting ended and I was wheeled into the operating room.

This time I was completely covered so there was none of the cringe-inducing naked embarrassment of the previous replacement. It's true that my two anesthesiologists were once again alarmingly handsome, but my lingerie choice didn't even factor into anything this time around and it was a welcome change. Melissa and the Fellow stood over me, still discussing the device placement (another teaching moment for the Fellow) and at some point, Melissa used the word "boob" when talking about what I would decidedly call my "boob." A look of horror crossed her face and she said "I'm sorry, I meant 'breast'" in a way that was so fussy that it made me laugh. And then she said something about "the can" which I thought was even funnier and a truly strange way for a cardiologist to refer to a breast, until I learned after the procedure that "can" is what they call the device itself. And then I had a pretty good laugh about how I thought my surgeon was talking about my "cans."

I have probably made it sound like I was just lying there all chill and relaxed, but in reality, I was in tears and panicking and praying that I would live through this because I know that any time anesthesia is used, things can go wrong. Perhaps especially with someone whose heart needs to be replaced and who has a corpse-like normal blood pressure. But eventually, Ben (who looked like that handsome, cleanly-bearded barista at the coffee house who wears Buddy Holly glasses and makes you wonder if your life could have taken a different turn at some point) started my anesthesia and I floated away.

And then without warning, I was kind of awake again and I could hear Melissa and the Fellow talking and I could feel them tugging on something inside of me and it kind of hurt. There was a lot of pressure, but there was also some actual pain. I told Ben I was awake and that it hurt and he explained that my blood pressure (BP) had dropped and so he had to bring me up a little bit to get it stabilized. The tugging continued. The pain continued. I was sort of in a twilight so it was completely surreal and I was unable to actually connect the pain to the fact that two women had their hands inside of my chest. And then Ben dropped me back down and I floated away again.

This continued several times with me partially waking and feeling pressure and pain and telling Ben it hurt, and then me floating away again.

And then it was over. Ben brought me all the way up and explained that during the procedure my BP had dropped to 66/25 and they had no choice but to bring me back up and stabilize me. For those keeping score at home, that bottom number is kind of crazy low, even for me.

So then I'm in recovery and Derek is there and everyone is laughing because I have no idea how to act appropriately and I have a captive audience so I'm "on" and it's showtime. We were basically the most popular girls at the dance for a while in recovery and at one point, there were at least 6 or 7 doctors and nurses crowded in there, yukking it up with us... and watching my EKG and BP in what appeared to be wonder. They even brought me some baked potato chips and a half of a ham sandwich to try to get some sodium into me and normalize things. We laughed that I was being administered potato chips and lunch meat medicinally.

And then my BP dropped to 62/16. It was so low that they didn't even believe their own equipment and brought in a Doppler device that sounded like one of those stupidly loud squawking spirit box things they use on the TV show "Ghost Adventures." Had it produced any disembodied voices, my BP likely would've risen, but mostly it just confirmed that my BP really was that low. I was likely making some joke about how I could detect a high pressure system moving in over the Cascade mountain range when my post-op nurse and Melissa suddenly gasped and literally staggered back from the EKG screen they had been monitoring.

And that's when shit truly got real for me. I could see it not just on Derek's face but on the face of the people who do this aaaaall day, several days a week. My heart was really doing it's thing, just flopping around my chest like a fish out of water and my EKG must've been quite a sight to cause that kind of reaction.

Melissa suddenly said "If her blood pressure doesn't come back up, she's not going to leave this hospital until she gets the transplant."

Wait, what...? My jokes about being a vampire and being able to forecast weather systems stopped. The reality that we were 4 hours post-surgery and my BP still wasn't rising was sinking in. The transplant had never seemed more real.

Derek's eyes met mine and held. 

They decided they'd admit me to the ICU and administer a drug called Dopamine intravenously to  artificially bring my BP back into what amounts to normal range for me (when unmedicated, that means 85/65ish, which is still pretty freakishly low). I'm not going to lie, hearing the term "ICU" was frightening. The only time I've ever even seen an ICU in real life was to visit someone who was literally dying. There were tubes and wires and lots of loud machines and a feeling of finality. Everything was brightly lit, like they were deliberately trying to keep Death from appearing in the shadows to collect a soul. 

I mean, I felt tired but I was still getting up from the hospital bed and walking unassisted to the ladies room and it didn't feel that different than a random Thursday at home these days. How could I be in such dire straits and not know it? (And also, whatever happened to Dire Straits? They had a good groove going there for a while.)

They began the paper chase to move me and we sent Derek home. There was no point in him continuing to sit around, I was in the safest place I could be, and we had 4 pets and a King Ranch Chicken casserole at home who would be very happy to see him. We were both actually relieved by then that they were keeping me because the last thing we wanted was to put me on a boat and travel two hours away from the hospital and be in a situation where we had no way of raising my blood pressure. Seriously, do people die from that? I still don't know the answer to that. It seems like this is something I should know, you guys.

Finally at around 8:30 p.m., they moved me into the cardiac ICU, which is called the Critical Cardiac Unit and everything was strangely upbeat and softly lit. There were very few wires. My nurse and the rest of the staff were incredible, seeing to my every need, making sure I was as comfortable as I could be-- I told Derek via text it was reminiscent of Lumiere and the cast of Beauty & the Beast performing "Be...Our...Guest!" I had ear plugs, an eye mask, my laptop, the white noise app on my iPhone, Percocet, an Ambien and as strange as this sounds, I slept for a miraculous 12 hours, which has to be a hospital record. And all of this despite some early troubles with the Dopamine dosage (have you ever felt like you are an out of shape middle-aged woman running the 100 yard dash, but you're actually lying down in a hospital bed? I have!) and with an IV dose of magnesium that made me want to have my left arm removed (yeah, let's never do that again).

I was there for three nights. By night two, my BP came up to my unmedicated normal range, stayed there without Dopamine, and they began giving me my regular meds. It eventually dropped to my normal medicated range (67/47ish) and held there. So they tagged me and released me to the wild.

Since then things have been mostly good, despite a rocky first weekend in which I almost returned to the hospital and an allergic reaction to the actual defib (apparently they didn't use platinum or real gold and my body rejects anything less) and an allergic reaction to the surgical glue they used. Both of these things have made me want to claw this little baby right out of my chest for two weeks, but I'm adjusting and it gets less itchy every day. Frankenboob is healing and looking slightly less grisly with time. Like everything else in life, soon this will all be just a memory. 

But it was also a big wake-up call for us both. As I've said before, I'm one of the lucky ones on the heart transplant list. At least on the surface, I live a normal, if highly sedentary life outside of the hospital. Occasionally I'm able to pull it together enough to leave the house to see friends perform in community theater or go to the movies, or have lunch, or even shop a little. I certainly move slowly and deliberately, but I've mastered a sort of casual amble to mask it and when people see me they are mostly kind of shocked at how "normal" I appear.

But the thing is, I'm not normal (this is likely less of a shock to you than it is to me). My system cannot handle change the way it used to and is knocked wildly off-kilter when something is different. I still feellike me in my head, but my body has become this delicate little flower that I don't like at all and there's literally nothing I can do about it except try not to upset it and wait until I get a new heart. 

Whenever that might be.

(A special shout out to my friends Jennifer Pisani and Elizabeth Faye & Mom who visited me during my stay. No matter how expert and gentle the care at UW, there is no substitute for the warm presence of friends when you're frightened and all alone. And also a shout out to Vicki and her son Ridge with whom I shared a hilarious FaceTime session during a shift change that likely made my new nurse think I was a complete nutjob. She wouldn't be that far off.)