Friday, April 28, 2017

Joe Omundson

Well, that didn't go as planned: surprise heart valve infection

I was recently hired by an acquaintance to drive a moving truck from New Mexico to Minnesota. The plan was to hitchhike from Moab to Farmington, drive the truck for 3 days, visit friends in Minneapolis for about a week, and hitchhike back to Utah.

The first half of the plan went relatively well. The first day I got a ride from a nice Moab couple going for a hike, from a wildland firefighter who lives in his truck half the year, and from a racist guy who used to do cabinets. When I was about 7 miles from the lady's house who I was helping move, I called her and she gave me a ride.

The next day we picked up her 24' moving truck, the biggest she could rent from Budget. I helped load it up and this was when I knew something was wrong. I was getting lightheaded with effort and felt feverish. At night, I was sweating in bed even though I wasn't hot. These symptoms had been coming and going for at least a couple weeks, and I'd been doing my best to treat them as though they were a normal cold or flu, as I tend to get paranoid that something worse is happening. But it was getting to the point that I couldn't ignore it any more, and I knew what the problem was.

This is my "oh, shit" face

I'm surprised that they let people drive moving trucks with no training. It was essentially as wide and as tall as a semi truck, though not as long. The truck only had a couple thousand miles on it and it drove well. The lady I was helping move followed me in her car. I got to Denver the first night, Omaha the 2nd night, and finally Minneapolis on day 3, with no problems.

At least, I didn't have any problems with the truck. Myself, I felt horrible. I woke up in the middle of each night with my clothes soaked, the hotel bed wet like a puddle around my body. I felt highly febrile and had a hard time staying warm; I'd bundle up in the truck and turn up the heat, shivering uncontrollably when I went outside into 55 degree weather.  As I drove I gazed longingly at the hospitals I passed by, knowing I needed to visit one as soon as I could. I went through some kind of existential crisis and wondered if I should just let the disease kill me.

We arrived in the Minneapolis suburb that was our destination. After dinner, I helped unload a few things, then got a ride to my friend's house in St. Paul. He's one of my best friends who I've known online for nearly 15 years but this was only the 2nd time I'd met him. We spent some time catching up before I went to bed.

I took my time getting ready in the morning, but I knew what I needed to do that day. These symptoms I'd been having were the same as when I had endocarditis, a bacterial infection inside my heart, back in 2012. I am susceptible to this disease because I have a prosthetic valve in my heart and any bacteria that make it into my bloodstream have a chance to attach to it and take root. I looked up my options for emergency departments and found that the University of Minnesota hospital was only a mile and a half away. Really, all I wanted them to do was to take a culture of my blood so I could either confirm my suspicions or not worry about it so much. Urgent care would have worked for that, but my insurance only covers emergency department visits out of state. I walked there and checked myself in.

I was in a bed in the emergency department for a few hours. They took my blood, they did an echocardiogram, and the blood culture was going to take a while to process so they were about to send me home and call me with results. A nurse took one last set of vitals before sending me off, but when she checked my temperature it was 102.7. She called the doctor back in and he told me I wouldn't be leaving today. I was admitted to the cardiac unit.

I was in the hospital for 5 nights. The blood culture soon came back positive for streptococcus mitis, and I was started on IV antibiotics. My phone died and I hadn't thought to bring my charger, so I wasn't able to update my friends and family for a while, but my brilliant friends who I met 3 years ago on the PCT came and found me and brought me a charger and several other thoughtful items.

I had hoped to "see the city" and I guess technically I had a good view

Well, I wasn't going to be hitchhiking anywhere in this condition. In fact, I couldn't return to Moab at all. To continue my treatment (6 weeks of IV antibiotics), I needed to go back to Oregon where I had health insurance. A couple years before, I put my basic info into the website like I was told to do, and was quite surprised to be automatically set up with good insurance through Oregon Health Plan that was completely free. I figured my coverage would have ended when I moved to Utah, but I guess my move was ambiguous enough that the Oregon plan automatically rolled over into 2017. And what a relief -- to my knowledge they have covered 100% of my costs so far.

I wasn't sure how I'd get to Portland, as I didn't have enough money for a flight. I'd just earned $400 from my moving gig but a plane ticket on short notice was going to cost more than that. It had to be carefully coordinated so that I wouldn't mess up my daily antibiotic schedule. I hoped I'd be able to borrow enough money from someone to get home, but in the end I didn't need to: I am lucky to have great family support and my Mom decided to fly to Minneapolis. She basically saved my ass. She spent a few days with me at the hospital, which was great because she's a counselor and knows how to help people who are going through a hard time. My PCT friends hosted her at night. Then when I was discharged we spent one more night at their house and flew back to Oregon together.

Strangely, I experienced a profound sadness when I left the U of M hospital. It had felt like we were a team there. I had good people working together to make sure I was OK. They were nice to me. It was my first time in Minnesota and they felt like my family. Even though being released to go home was obviously a positive thing, and even though my mom was right there with me, I almost felt abandoned into the wide world and I wasn't prepared for how much that shook me up.

So, now I'm in Portland, and have been here for nearly three weeks, faithfully taking my meds and making trips to the hospital for dressing changes and lab tests. I have a PICC line, which inserts near my lower biceps and travels in my body 43cm to the vena cava, just outside my heart. I inject myself with antibiotics every morning. Another friend who I also met on the PCT kindly offered for me stay in a camper in her family's backyard in SE Portland. It's a wonderful space and I'm so grateful to be able to stay here.

My symptoms were under control for about a week after my discharge, but they started coming back after that. This was not a good sign. The antibiotic I'm on (ceftriaxone) was tested to be very effective against this specific strain of bacteria, yet I was still showing symptoms of infection, which indicates that the bacteria was hiding and growing in a place where the bloodstream cannot reach. If this is indeed the case, open heart surgery will likely be required to remove whatever is infected.

I started feeling better again a few days ago, and we're hoping the antibiotics will be able to get the job done so that I can go on for a while longer with this valve, delaying my need for another open heart surgery. But we won't know for sure for a while. I'm having some more ultrasound imaging done on May 8th to see if there's any obvious sign of an abscess or a growth. If that's inconclusive, I'll be on the antibiotics a while longer. Then they'll stop, and I'll either feel OK, or I won't.

And that is the story of how a driving/hitchhiking gig between NM and MN turned into a 5-day hospital stay, and a potential open heart surgery in Oregon.

To be honest, I'm not sure what my next move is going to be. A lot of it depends on whether I need this surgery or not. But it might not make a lot of sense to move back to Moab if I'm going to need ongoing checkups here in Oregon this summer. My car is down there, so I'll have to go get it at some point, but maybe it's time to be in Portland for a while? The summers can be pretty nice and I haven't been around for one in several years.

I haven't been posting anything on this blog and it's not because nothing is happening in my life, or because I'm not thinking about things I want to share, or because I've forgotten about the blog. I just don't seem to have much energy to focus on writing right now. I'll be back, with plenty to say, but for a while I think I simply need to focus on living and getting better, so I might be quiet for a time. I'm posting health updates on Facebook if you'd like to look me up there.

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