September 19th, 2021

September 19th, 2021
 
I haven’t written anything in here in a long time, and if you’re still following this, thank you.
 
One of the reasons I haven’t written in a long time is because I haven’t exactly needed to, the updates were few and far between and the major things never felt as major as being in the hospital, especially because they were all preventative measures towards living with heart failure.
 
So, I guess that means we’re due for a pretty long update, and for those of you willing to read the whole thing, thank you again.
 
In late June we met with the heart surgeon a few times, who (after a few quick meetings) said that Cory was going to need surgery to have a permanent defibrillator put in. I guess every defibrillator is a pacemaker but not every pacemaker is a defibrillator? Or it’s the other way around, I’m still working on this medical degree here. Cory was understandably upset, surgery is a big deal, but we had to move forward to get the life vest off and to move towards a normal life. By normal, I mean swimming and kayaking and not having a car battery attached to him (thanks to Sean for coining it that).
 
On July 12th we arrived at St. Luke’s for the surgery. It was fairly quick and went very well and we got to go home that day. The thing about this surgery (if you’re considering it) is that they say in the doctor’s office that it will be two weeks recovery, but what they mean to tell you is that it will be six weeks. After surgery they said four weeks and at the check up they said two more weeks, which was frustrating because we thought he would be up and running sooner, but it’s fine. What isn’t fine is that when you have surgery and can’t be yourself, it takes a lot out of you. As some of you may have read in my previous Facebook posts, we didn’t handle it as gracefully as I would have preferred, but nothing is every exactly what you wanted it to be (see; Heart Failure at 36) and we survived the recovery together. By the way, the six weeks was really more like eight weeks and even still its sore for him and frustrating because he has this huge lump on his chest.
 
Cory’s medications are not set in stone. It’s been a rollercoaster of “up this” and “stop that” and “take more of this” and “maybe not that”. But that’s how all that stuff works, its finding the right balance of medications to keep his levels where they need to be. However, when you up diuretics enough you’re also lowering blood pressure with all those blood pressure medications, and about three days before Irish Fest, Cory got up to use the bathroom at 3am and fainted. They think he just got up too quickly and his pressure just dropped. Anyways, he fractured his foot in two places. I mentioned Irish Fest because Cory was so looking forward to helping out and being a badass cook again during that weekend. He had been doing his weightlifting at home (one pound weights, he was very weak after not using his arm for so long) and it was really hard for him to be at home with a broken foot.
 
Cory saw a specialist that said he only needed a foot boot and not a whole leg boot, so we got him one and he was back in action… sort of. So, Cory was sick and tired of being sick and tired, so he asked me to play catch with him (in a light no walking kind of way) and HE DIDN’T CATCH THE BALL. But yea, it hit him in the face, and he got a black eye. The swelling wasn’t bad but couple that with a broken foot and he didn’t look great. But his attitude was awesome, and he really worked hard to stay positive.
 
Cory takes potassium every day, they’re giant horse pills and they’re tough to swallow. When you have a heart condition, its apparently very important to have enough potassium. Sodium, potassium, and the electricity of the heart are all very intertwined. That is about as much as I learned about the science of that (thank you Audrey for the lesson). Cory’s inability to stomach the potassium (he missed a couple doses, he takes three potassiums daily) and the fact that he couldn’t keep them down lead to a potassium shortage in his body. He has really good days that are followed by really nauseous/ tired days and that’s the balance of regular life that we work on every week.
 
That brings us up to this weekend.
 
On Thursday he only kept one potassium down. On Friday he felt weak and sick all afternoon during his prep shift. He asked me to drive him home, so I did. At 5pm when I was training hosting, he called. He felt awful, worse again. I will say for the official record, that when we went to urgent care because of the nausea about two weeks ago, they told him it was psychological, in his head, and then they gave him some nausea meds that he had gotten a few weeks before. They told him to talk to his therapist about why it was in his head, and they sent him home. So this time, he took the nausea meds but still couldn’t keep anything down. He felt weaker than ever, and he started losing time.
 
By losing time, what I mean is that he was watching TV and missed large segments of it. He didn’t know what was happening, so he called Aurora again to ask them what to do. They said his defibrillator may have gone off, and that he should go to the ER immediately. I ran home from work to take him, by the time I had gotten home the defibrillator went off for real.
 
So sidetrack on what that means. You know how on TV in the doctor shows where they take the paddles and shock someone? And they yell CLEAR so that no one else gets shocked? And the patients whole body seizes and spazzes and they’re unconscious? That’s what Cory’s internal defibrillator does in his body when it goes off, and Cory’s description is “like a sledge hammer in the chest”.
 
We got to the ER, they did his entry stuff, we sat in the waiting room, we got to the small room where they gave him an IV and did all the vitals again. And then the defibrillator went off again.
 
It went off 13 times in the ER. 13 times his eyes rolled back, his whole body seized, he screamed in pain. 13 times it sent the shocks through his body.
 
That whole situation in the ER was kind of a blur. Rushing to another room while I held his belongings crying outside the room. I thought he was going to die. Maybe 8-10 people working on him. People running in and out trying to find the magnet that stops the device in his heart. Them getting the crash cart in case the device stopped working. Someone asked me what his weight was and I blanked, even though he weighs himself three times a day and tells me what he’s at. I blanked. Who is his doctor, where are they. They called Boston Scientific (brand of pacemaker) as soon as he arrived and someone was driving up from Oak Creek.  More blood work. Cory screaming. Them asking if he knew where he was. I tried to stay out of the way but they never asked me to leave the room. At the end they said they really didn’t think he would make it, which was what was going through my mind the whole time. What went wrong, what just happened?
 
They said 13 times was more than most people have in their whole lifetime.
 
I was told that potassium levels at 2.8 are considered incredibly dangerous, life threatening bad. He was at 1.9.
 
Putting potassium in the body is apparently impossible, any way you slice it. There are the horse pills, smaller pills that are also enormous, or there is a powder you add to water that is also nauseating, or they can put it in an IV that burns going into your skin. So they gave him three pills and put it in the IV. He felt better almost immediately, he started looking better and the defibrillations stopped.
 
St. Luke’s Aurora is the heart place, we all knew that, so they set up a transfer. I watched him get loaded into an ambulance again. To say I was emotional is the understatement of the century, watching him go off was all too familiar. “Here we go again”.
 
He got to St. Luke’s at about 10pm, got settled in, got all hooked up to all of his things again. Like it was just what he does. I got to facetime him, see him, ask him questions. He got my Discovery + password to keep binge watching Chopped. I would see him in the morning.
 
I got a call at about 8:40am. His defibrillator went off 15 times Saturday morning. 15 more times.
 
The doctor called me. They decided the best thing to do was put him under. No more pain, no more awareness of the pain. I told them yes, I understand. But I needed to talk to him. I FaceTimed him and the nurse answered, he was having another defibrillation. I got to see him for a few seconds after, and then they put him under.
 
Cory has been (mostly) unconscious since Saturday morning. They have him on (let me get my notes) Propofol (puts him out), Fertanyl (pain med), Lidocaine (also to put him out), and Esmolol (heart rhythm med). They put in another PICC line and also put in an arterial line. The nurse (yay Ian!) told me that the level of these meds he’s on should have totally knocked him out, but he’s not having it and he’s been back and forth awake. He also likes to: ask for is ipad, open it and then fall asleep, ask for his phone, open it and then fall asleep, ask for his glasses because the meds have his brain in a fog and he can’t see so he thinks his glasses will help and then they don’t and he falls asleep, ask for paper and a pen write some form of nonsense and then fall asleep, try to sit up, have the nurse adjust his bed so he isn’t leaning and then fall asleep.
 
I told him that if he doesn’t rest he’ll have the tubes in longer, but he keeps forgetting for some reason…
 
He is intubated. There is a tube breathing for him. He has a tube that takes out bile from his stomach. He has four IVs in his arms and the PICC line and the arterial line and all of the other tubes and lines keeping him okay. He’s pissed he can’t talk. He’s mad cause they brush his teeth or something to avoid pneumonia, he hates that he can’t get up. He’s mostly pissed that we don’t understand his hand gestures and that his (already) atrocious handwriting is illegible.
 
But he is okay. Ian said his potassium is now at about 4, his blood pressure and heart rate are good. He’s doing well. They plan to extubate tomorrow morning, let him breathe on his own, and hopefully feed him something. Ian isn’t working tomorrow and I thanked him for everything and then he said “Oh no, I’ll see you Tuesday!” so I think we’re maybe in this for the long haul.
 
The intubation and putting him under it to let his heart REST. Let his body rest. Apparently the adrenaline going though him every time it went off set off the clusters. The adrenaline put his body in panic and they needed to shut him down.
 
Other questions that may need answering:
Is he going to be okay?
Well. Yes and no. He still has heart failure, that didn’t change. But we are pretty sure that this was a potassium thing which we can fix with medication. His regular heart failure doctor was in this weekend (I kept missing him) but he is totally in the loop as to what is going on. I will say this, Cory is an anomaly. They’ve said it many times in the past few months. Organs happy, fluid high, sodium good, heart failure. They’re kinda stumped and it scares them (and us, duh), but we were constantly working on it. They’re worried he might crash (and he did) but not for the same reasons we thought. Transplant is the end game, but (paraphrasing) is that we’re going to kick the can down the road for as long as we can until he needs it. I don’t think this was the big crash but I don’t know yet. I don’t think they know yet. We are all taking this one day at a time and keeping him alive, its all we can do.
 
Was this COVID?
I put this one in here because there are some things unanswered for everyone over the summer. Cory’s doctors had him get a DNA test. This is genetic. He had a gene mutation that basically said “you will have heart failure sometday!”. The issue is, when was it going to happen? The gene mutation should have put it at mid-forties, but the early onset could have been COVID, but they still didn’t know. I don’t think they can know. It gave us some answers, yes but… there’s no certainty.
 
Does he have his stuffed animals?
Yes, he has a stuffed unicorn that he took kayaking last week that (the amazing) Jo Dankle gave him for his first water outing, and he has Piglet to keep him company.
 
Can I see him or visit him?
Actually, yes you can. So the visiting stuff changed a little since March. He can have AS MANY VISITORS AS HE WANTS. But only one at a time. I’m gunna be there, but text me or call me and I’ll wait in the lobby, I’ve got stuff to work on too. My cell phone number is 262-510-3370. I may not always answer, but I’ll do my best to get back to you right away. Visiting hours are from 10am-7pm, and you have to wear a mask at all times.
 
St. Luke’s Hospital is at 27th and Oklahoma. There’s a huge parking garage that I hope to one day make a map of because of it’s wackiness. Park in there somewheres, go to the elevator (not the medical offices) to the 2nd floor. They ask you if you’re vaccinated and if you have any symptoms and then give you a nifty colored wristband. Cory is currently on the 7thfloor of the Cardio Vascular ICU, room 20. Take the elevators to the 7th floor and then go to the right, there’s a phone on the wall. Pick it up and the nice person at the desk will ask you what’s up. You’re here to visit Cory Wilson, room 20 and say who you are. They will then check with the nurse that it’s all cool, and then they’ll let you in but also you’re in the matrix or something. The phone thing isn’t there when it’s a regular room, which he will be in after ICU. Again, I’ll go wait in the waiting room and do some stuff, please don’t feel like you’re kicking me out. I want him to see all of the faces that he loves, and I want you all to see his unshaven heart failure face too. He loves me and seeing me but he needs you guys too, really. Even if its just for an hour or so. Also, I have to take care of all the pets and hermit crabs and whatever else weird pets we have so I’m not there from 10am-7pm.
 
No flowers, no food. And again, you have to wear a mask at all times, even when the medical professionals aren’t in the room. I took mine off to write today and I got a talking to. If they have medical stuff to do they will ask you to step out if needed and if anything happens with him they call me right away. You can ask them questions, they’re happy to explain everything. That nice guy Ian explained the same thing to me like three times today, nurses are amazing.
 
How are you?
I’m super sad, all of the time. This is bringing all of the horror that was spring 2021. Being alone in the house, calling the nurse at 2am cause I can’t sleep. Also not sleeping. Researching medications. Memorizing stats/ terms. My house is a mess, I am a mess. I cry a lot. But I am okay. Cory is my best friend, my person. He keeps calling me his PIC (partner in crime) but that’s to bro for me. We were at a place where he was kayaking on Monday and fishing with Pat on Wednesday. We were at a place where we can’t afford a vacation but we wanted to go camping. We started making plans again. And now, we’re not. My family is amazing, my mom drove to my house from Waukesha today just to give me a hug. They check in, they call, they send cute animal pictures. My sisters have been literally here for me. I get regular texts and calls and invites to random “lets just pet this Guinea Pig” Pat has brought me food and given all the bear hugs. My coworkers have taken over the job and are crushing it, the love that place has is unprecedented. That place is a legit family. I have the best people in my life, and if I don’t respond to you it’s really not you, it’s me. Please keep texting me, you’re not bothering me AT ALL. I love to know how many people care about both of us and love both of us. My people are my world, so again, please text and call and write.
 
Do we need anything?
Well, if you have the cure for heart failure in your back pocket, now would be a great time to bust it out. But no, I mean yea I need to get dog and cat food and they don’t carry Fromm’s just anywhere but I’ll pick it up. I have been ordering food and not making food but that’s such small potatoes to everything else. By the way, potato peels allegedly have a lot of potassium. And if anyone is an animal whisperer, please tell our cats that NO, I did not get rid of their Cat Dad, and they can stop squirreling around me acting like its my fault.
 
But no, we don’t need anything. We are okay. We’re gunna coast for a minute and just be what we need to be and accept what we can handle. I’m not going to work for a minute (again, thank you Clare staff) and Cory is obviously out for a while. We’re gunna focus on getting him better and really, that is all that matters. Literally that is all that matters.
 
Could this have been avoided?
Uh yea, if he didn’t have heart failure. Also I mean if he had been up and up on the potassium. But he’s been feeling sick on and off for a while, and maybe this will help get him in a better rhythm to take care of himself better. He has like 4 water bottles to measure his fluid intake and he has alarms set for all his meds, but if he’s sick he’s in the right place, so maybe they can solve the nausea that comes with potassium.
 
Okay, but if I see him, what do we talk about?
Probably not heart failure. He is legit sick of all the medical talk and he wants to hear from his friends. Don’t ever feel like your life isn’t important because over the last few months (especially after surgery) he wants to hear about you. And he wants to be happy for you. Make fun time plans, talk about going fishing even if it never happens. Just be you, he misses you.
 
Anything else?
Yea, hug your people. Tell them you love them. Seriously and please. What do you do when you think it may be the last time you hugged the love of your life? Or even just saw their eyes open? Or when you are intubated and can’t talk? I will see him tomorrow, I hope. But nothing is guaranteed. Make sure you let the people you love know how you feel.