The Numbness is Fading

This post is going to feel random because I haven’t had a chance to get back to this with everything going on.   My husband, Alex, passed away on August 18th, 2016 at University of Washington Medical Center. He’d gotten a bad infection somehow – they aren’t sure how – and it had spread through his body incredibly fast. He passed of “mixed Cardiogenic and Septic Shock”.

Alex and I had known each other since 2001 shortly before I turned 16. We met online and couldn’t stand each other for quite a long time. We hung out in the same chat rooms but we generally tried to avoid each other as much as possible. Then, at some point, I grew up. Life dealt me some blows and I was forced to learn to contend with the world in a different way. And suddenly….Alex and I started to click, started to realize we had a lot more in common, started to realize that there were possibilities that neither of us saw before. We talked on the phone every…single..day from the end of 2007 until March 2009 when I finally flew out to Northern California to meet him in person for the first time.

I fell in love almost instantly. He met me at the airport and took me inside, didn’t hug me or anything at first. We sat down to wait for the bus to take us back to his apartment and I remember how nervous he was. He wouldn’t look at me for more than a few minutes at a time, he sat down and accidentally slammed his head into the wall (3 times!), which had us both laughing hysterically. And we just clicked. I spent that whole week with him having a lot of firsts: the first time I ever saw the ocean, the first time I’d ever had sushi..etc. He didn’t attempt to make a move on me at all for the first 3 days, which was super confusing, but then again I wasn’t rushing to make moves either. Then day 3 happened and we’d gone out and done a whole bunch of running around, showing me the city, getting stuff for dinner. I think we’d both just kind of reached our limit with the no-contact. We both went to fall asleep and talked for a solid hour. At some point he leaned his head down onto my pillow and just stayed there and I couldn’t resist – I kissed him first. Then immediately retreated, said goodnight, and covered my head with the blanket. He didn’t let that stand long, I’d opened the flood gates. 2 days later he finally asked me to be his girlfriend officially – or well, told me that I was. “So, I guess this means you’re my girlfriend now”. Some people might find that super unromantic but it really, truly was. Alex spent the majority of his life with his guards up, and he slowly but surely put them down with me.

I left to go back to Michigan a few days later, which was one of the hardest things I’d ever had to do. But I was still in college, getting ready to finish my degree later that summer. A month later while we were chatting online, at random, he says “So when are you moving in with me?”  and I quickly said that I had to wait until September when I’d be finished with college. We settled on 09/09/2009. We were both over the moon when I finally got there, and our life together began. We got engaged at my parents’ house on May 19th, 2010 – he gave me a small sapphire ring that he said reminded him of my eyes.

In June of 2010 he was accepted into a Masters program in Juneau, Alaska for Marine Fisheries Biology Management with a specialization in Rockfish genetics. We had to be to Juneau by August 1st. We had just over a month and a half to get ready. We packed up, got rid of a bunch of old furniture and things he’d had before I was in the picture, stuffed as much as we could into our 2000 Malibu that his Mom had given to us, and drove from Arcata, CA to Prince Rupert to catch the Ferry. We lived in Juneau for 4 years.

We got married in Hell, Michigan on June 10th, 2011. Yes, you read that right. Hell. Alex was an atheist, and I’m pagan, so doing a church wedding was out of the question. What better way to display our sense of humor than getting married where we did? Our reception was Hades/Persephone themed, we had a beautiful croquembouche for our cake, and served Alex’s recipes for our favorite Mexican food that we made at home. It was perfect.

In December of 2013, it became obvious that Alex’s ongoing issues with his heart were worsening. His ejection fraction had gone down to 10%, he was struggling with breathing and with being able to do activities he’d always done. The cardiologists in Juneau were locum – they would travel up to Juneau every 6 months from Seattle. We knew we couldn’t wait that long. He needed to be close to medical professionals. We made the decision to move to Seattle at that point. We left Juneau on July 25th, 2014. I had secured a job down here in Bellevue, WA and once we left Alaska, Alex started to do better.

Then he got a very bad cold that turned into pneumonia in December of 2014. He stopped eating, stopped sleeping, was having a hard time doing much of anything. I finally was able to convince him to get into a doctor in January of 2015 and his lungs lit up like Christmas Trees when they did the x-ray. They got him onto medication and sent him home. He started putting on water due to Anasarca (all over body edema) shortly thereafter and wound up gaining over 80lbs of water in just over a 1 month time period. They decided to hospitalize him in February 2015 and gave him IV diuretics to bring the water down. He lost all 80lbs of water in 1 week and came home.

What followed were months of him doing really well. The water was still coming on and going off, but his meds were working better than they had been before. Then in August, he started having what we thought were seizures. They were mild in nature, didn’t last more than a few seconds, and his doctors weren’t worried. They started becoming more frequent and he was transported by ambulance to the hospital in January 2016 after a particularly bad set of them. He had MRIs, CT scans, lots of blood work, lots of testing and they could not find a cause. He got a bad pneumonia again in February and March and the water started to come back on. By May he was struggling with maintaining his body temperature and engaging in normal activities the way he would normally do. He then got an infection in his leg that progressed very quickly, resulting in an ER visit at the beginning of June 2016. They wanted to admit him, but Alex hated the hospital where we’d gone and refused. I wound up taking him to University of Washington Medical Center ER on June 9th and they admitted him to the cardiac ward the morning of June 10th (our 5 year wedding anniversary).

This time around, the water didn’t come off anywhere near as easy. They had to try several different medications, increase the dosage almost daily, put him on tons of different things to bring it down. He had over 120lbs of pure water on his body, the worst case they said they’d ever seen. He had lost over 90lbs of that when he was discharged from the hospital a month later. He spent his 42nd birthday (June 15th) in the hospital, our wedding anniversary, the 4th of July..etc. I was with him Every. Single. Day. I did not let those nurses and doctors take care of him body wise unless it was for a medical reason – like giving him his medications or taking vitals. Everything else was up to me. They got him stable and decided to put in a subcutaneous internal defibrillator on July 19th. He had the surgery, took the time to recover. Then  on July 30th we found out they were raising our rent at our apartment from $975 to $1400 by the 1st of September. We began the process of moving to Olympia, WA so we could be closer to the ocean for fishing – which Alex loved. During that time frame, all through the next weeks, he was at the doctor’s office once every 2-3 days getting medication adjustments and blood work. He was on 100meq of potassium 3x per day, increased amounts of diuretics, meds to increase the effectiveness of the diuretics..etc. It was awful and he was miserable.

On August 14th, I noticed a bruise on his stomach that was about the size of a half dollar. He said he’d been having little pangs of pain for about a week and a half but wasn’t sure what it was. He was tired, so we both went to sleep for a few hours. I woke up 3 hours later and the bruise was the size of a football. I rushed him to the ER, where they stated that he had Cellulitis and gave him a prescription for some antibiotics. We also almost had an apartment secured on that day.

We both woke up with what we thought was the Flu that following Tuesday. I was throwing up, he was throwing up, we both had diarrhea, we both had headaches. The “cellulitis” bruising had spread all down his abdomen and and to his back by this point. He said not to worry about it since he was already on antibiotics. The cough he’d had for a while was also gone.

On August 17th, I came out into the living room and could tell immediately that something was wrong. He said he was weak, he was having a hard time with getting to the bathroom on time before having accidents, and he just generally didn’t feel well. He didn’t want to go to the hospital, figuring that it was something connected with the flu bug. I asked him to call his doctor and ask, because I felt like it was time for him to be admitted. He agreed, called his doctor, and around 2pm they told us to come into the ER. He did not want to take an ambulance, so I did full body transfers and got him loaded into our car, tucked him in with blankets, made sure he was comfortable. He was in a lot of pain and figured that it was because he was suddenly putting on so much water. He wasn’t urinating as much as he would usually at this point, either.

We got to the ER and security and other nursing staff helped me get him out of the car. We sat in the ER waiting room for about 30 minutes before they brought him back to the triage area. His blood pressure was 77/38, he was begging for pain medication, and it was the absolute worst I’d ever seen him.

We finally got back into a room, got him his CPAP to help him calm down (it was relaxing for him), turned on Rachel Maddow on MSNBC, and waited. They gave him boluses of fluid to try to bring his blood pressure up and when it finally came up, they gave him morphine to calm the pain. By this point, we’d been in the ER for hours. They then decided to transfer him up to the Cardiac ICU around 10:30PM. They asked me to wait in the waiting room while they got him situated and that they’d come back to get me. 45 minutes rolled by and no one had come. I went in and asked what was going on. They said they were putting in an arterial line to try to get an accurate view of his blood pressure and that it would be another few minutes. I went out into the waiting room and another 45 minutes went by. I went to stand up to go back into the nursing station when the doctor finally emerged. She said they had had to give him a shot of adrenaline when he first got up into the bed because he was incoherent and his blood pressure was continuing to drop. He’d punched 3 nurses, ripped out the arterial line. They wanted me to come back and try to calm him down.

I beat the doctor to his door, put the bags and everything down, and looked in to see my husband restrained to the bed with a large CPAP over his face and he was loudly begging for water. I said his name and his eyes shot right to me. “What’s going on? They won’t tell me what’s going on. What happened? I don’t remember anything”. I told him everything I knew, that they had screwed up by giving him the morphine when his blood pressure was so low, and that he’d violently come out of the morphine coma when they gave him the adrenaline. He asked me why he was restrained and the nurse told him that he’d punched 3 people. He was distraught at this, kept repeating “I’m not going to hurt anybody”. I moved to the other side of the bed, held his hand, stroked his hair and his face…told him that they were going to put the arterial line back in because they couldn’t get a good reading of his blood pressure. They put me in a face mask and a hair net and I went right back to his side. I told him to watch me, and he did. His eyes never left mine. I talked to him about the goings on in the ER before we came upstairs and some TV shows he’d missed. He laughed with me and they got the line in. They took off the restraints finally, got him some water to swirl in his mouth, and he was back to being my husband again – not scared, not losing his mind – just knowing that he was sick and needed help.  It was 1:30am on August 18th at this point. They told me that he was stable, they had medicine going to combat the low blood pressure, he was on antibiotics in his IV (they had 2 IVs in him by this point) and that he was doing okay. I told Alex I needed to come home. I had work in the morning and had a lot of stuff I needed to work on because we’d gotten the official approval for the apartment we wanted. I told him that I loved him. He told me that he loved me, too. I asked him if he needed anything from home and he said no. I told him “Don’t you dare die on me” and he said “I won’t, I promise”. I said “Good, because I’ll seance your ass back here so fast your ghost tail will spin”. He laughed, the nurse laughed, he kissed my hand and I left.

They called me at a quarter to 4 and said he was still stable, was sleepy and in and out of being asleep and being awake but that he was doing okay. She said his blood pressure was still low and they were working to keep it up where it needed to be. I asked if he was behaving and she said yes, said she’d never seen someone’s mood turn around that fast just by seeing their spouse.

They called me again at 5:15am and asked if I was home alone. I said yes, why? They asked if I had anyone with me who could drive me to the hospital and I said no, why? And they told me that Alex had gone into cardiac arrest. They were “code bluing” him right then. They’d started CPR a half an hour earlier. They told me to get there as fast as I could. And I did. I don’t remember getting into the car very well and I don’t remember the drive to the hospital. I called my Mom, called my sisters..tried hard to figure out what was going on because my brain was fogged completely.

I got to the hospital and they escorted me upstairs. They were still actively doing CPR, had given him 3 shots of adrenaline, had shocked him several times. They had been doing CPR for over an hour. His heart never made another whisper. They tried to keep me out of the room, but I got into him and told them to stop. I could see in his eyes that he was gone.

The next thing I knew, I was screaming his name and saying No, No, god babe No….and then I passed out. I woke up in a chair still screaming 10 minutes later. I held his hand, and there was absolutely nothing there. He was just…gone.

There was no cellulitis. The bruising was a sign of tissue damage caused by the sepsis he already had coursing through his body. They found the infection in his lungs, in the fluid surrounding his torso, and in multiple other areas. He’d gone into full kidney failure, then full cardiac arrest from the shock.

The numbness is gone now. I’ve never felt more alone and broken in all of my life.

 

 

 

 

 

 

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One thought on “The Numbness is Fading

  1. Such a sad story. I’m no doctor, but it sounds like the infection in his leg had never been conquered, it just moved and hid. And a series of ineffective medical experiments when they did not really know what they were dealing with. So sorry you have to deal with all this.

    Like

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