Introduction.

Journal post up to date: March 2nd, 2021

Many of you know Cory James Wilson. He’s a goofball, a scrub, and an all-around amazing person. In January of 2021 we got COVID-19. It was mild, annoying, and we lost our taste and smell for a while (Cory for almost a month). We stayed home, watched movies, and waived at friends from the window. It wasn’t too bad but it sure was tough being tired all the time.

After quarantine, I felt back to normal. I was tired for a little longer, but not too bad. Cory stayed tired all the time. Everything was exhausting and he had to take breaks from work to sit down for a little while. He got winded bringing up all those potatoes from the basement. He had this lingering dry cough that just wouldn’t stop. We thought it would just take time to get back into the swing of things, but it just never happened. Cory had done some research on it and it seemed like it was just a lingering side effect and that he just had to wait it out.

On Sunday, February 21st it got worse. He really couldn’t stop coughing and was just so tired and drained. By Tuesday he could barely breathe. He was having a hard time getting deep breaths and wasn’t sleeping well at all, so he did a very un-Cory like thing and made a doctor’s appointment (he hates doctors). On February 25th he went in to see a doctor at our ProHealth care location in Pewaukee. They did a chest X-Ray and suspected a pulmonary embolism and sent him to the ER (which he hated). So, we went to the nearest ER at Waukesha Memorial hospital. They told him he had to be admitted for further testing (which he also hated). We finally got to the room at around 8pm and they allowed me to stay overnight with him because of his anxiety. He received a medication to help remove fluid from his body and antianxiety medication through his IV.

On February 26th we were awakened at 4am for a blood draw, the first of many many blood draws. At some point we suspected vampires but that has yet to be proven.

He also was (and still is) receiving a medication to avoid blood clots since he’s not able to move around as much. This is a separate shot that he receives in his stomach every day that he also hates, but he hates blood clots more. We now refer to this as his tummy medication. There’s talk of making this a new form of Tums “extra sharp!” Patent pending.

Later that day Cory received an ultrasound of his right upper quadrant, another chest x-ray, and a thoracentesis. They discovered in the ultrasound and x-ray that Cory had a build up of fluid in his thoracic cavity. They removed about 950ml of fluid from his right side, which was why he couldn’t breathe. Yep, they pulled almost a liter of fluid from his chest. He could breathe better immediately, but the issue was “why was there that much fluid in the first place?”.

Later that day they did an echocardiogram of his heart that they sent to the doctors to review for the evening, but they had to put Cory on a medication in his IV for lowering his heart rate (which had been at 125-130 resting since we had arrived) but it made his blood pressure get too low to quickly, so they had to give him the medication in smaller doses throughout the day. By the time we left WMH his resting heart rate was around 115.

On February 27th, a Saturday, Cory was ready to leave. He packed up our stuff and we waited and waited for the doctor to come in. Cory was diagnosed with advanced heart failure; his heart was only operating at 25-30%.

We spent the day hearing from different doctors about possibilities and solutions, long term and short-term care, next steps and best plan of action. We heard so many different things that I’m not going to pretend to remember. One doctor said “You’re young! You can recover in a few months!” One doctor said “I’m so sorry for the news, I know it’s a lot to handle and we’re going to do everything we can” while doing that sad pat on the back thing. Another doctor started talking about transferring to another hospital for treatment. He gave us options of staying another day at WMH, or trying to start a transfer right away, or being discharged. It was so much to take in and we had no idea what to do.

Later that day Cory received an electrocardiogram and another chest x-ray. The good news was that the fluid was not building back up in his chest. They tried to give him another medication to help slow his heart down, but it lowered his blood pressure to a dangerous level, and he passed out, and his heart rate didn’t go down at all. They moved him to the ICU to give him a heart strengthening drug that can only be administered in an ICU. Our decision was made for us.

On Sunday, February 28th we played a waiting game. We chose to transfer Cory to St. Luke’s Aurora in Milwaukee because it is one of the best cardiac hospitals in the country, and the best in the state (there were some challenges saying UW Madison is better, but we weren’t interested in getting into any debates) and because it was only 15 minutes from our house in Milwaukee. I wouldn’t be able to stay there so it really helped to be close to home, who knew we had such an amazing cardiac hospital so close?

 We spent the day watching Criminal Minds and meeting with each doctor we had during our stay. They gave us their best and wished us luck, all telling us we were doing the right thing and that St. Luke’s would take great care of us. It was a lot of goodbyes and good lucks, Abbie asked if we signed yearbooks, but I never thought to ask them.

At this point they stopped doing tests on Cory because St. Luke’s would want to do their own tests and it would be redundant. They organized doctor to doctor, administrative to administrative, then nurse to nurse before the social worker ordered the ambulance for us. Cory had to take an ambulance because the heart strengthening drug needed to be constant in his IV and had to be monitored by the paramedics. Cory texted me at about 6:30, he was all settled in his new room in the Cardiac ICU. I didn’t see him that night (I missed visiting hours) but he showed me some of the equipment he was on, they’d attached him to every machine to monitor him overnight and he was stuck in bed.

On Monday, March 1st Cory had another echo and met with the physical therapist who cleared him from being restricted to his bed. He got homework of walking 4 laps around the floor with his robot (his IV tower, we’re hoping to give him googly eyes soon) and his pet (his telemetry). He was walking just fine, getting his own ice for his water, and was just reading cooking magazines and watching house shows with me all day.

Around 4pm he received his right heart catheterization, which is where they stick a tube in your neck and send it down to your heart. He also had his left heart done, which is where they do the same but go through your leg. They are looking for blockages, which Cory had none, and to see how the medication is working in his heart. The Swan catheter had to stay in his neck overnight so they could collect data and then they could slowly move his medications around to see how they’re working. They hope that the medication can be given orally soon, which would get him out of the CICU. At this point it is a matter of finding the right medications, hopefully.

Q&A: Questions I have received.

Was this COVID? Yes and no. Cory’s heart failure is most likely viral. As I am writing this on 3/2 it is highly suspected to be viral, but they cannot prove it yet. It could still be hereditary (they are checking his DNA) and if it is viral, they cannot point the finger directly at COVID-19. It could have been from literally any virus from Mono to Hepatitis B (they are also checking for that). A doctor told me recently that since his symptoms of shortness of breath happened when he had the virus so its likely COVID but since it was over a month since he was admitted the virus may not be in his body anymore to correlate the two. Since COVID has only been around a year they don’t know the long-term side effects. They don’t know what it’s capable of. It affects everybody’s body differently and for protocol reasons I don’t think they are allowed to say “yes, COVID did this”. The electrophysiologist did ask him many questions about his life before COVID, last summer Cory was going for runs, kayaking, biking, and had a normal heart rate and great blood pressure. All signs point to COVID, but they cannot officially say that it’s the cause.

How is he doing? Cory is doing great. His attitude and demeanor have changed drastically from the day he was diagnosed to now. He has accepted that this has to happen and he’s going to do everything he can do be here for as long as possible. He has also accepted that there are many lifestyle changes that have to happen when he’s out and he’s ready for the challenge. I think that he hates everything that is happening and wants to go home, he wants his life back but he’s still goofing around, making friends with the nurses and wearing his Zubaz. He has a stuffed unicorn and his piglet to help with his anxiety, and many cooking magazines, coloring books, and an iPad to watch more Criminal Minds.

Will he ever get better? How long is recovery? We have no idea. Some doctors said that because he’s young he could have some sort of normal life in a few months, but he might always be on the medications and will have to change some things to keep his heart healthy. The weirdest thing is that all of the doctors have said that he is perfectly healthy. Everything about Cory is healthy, his lungs even sound great after that lake they were living in. He’s a healthy 36-year-old with a failing heart.

He has mentally prepared himself to be in the hospital for a month, but we don’t have any answers. We just take it a day, a procedure, and a test at a time. So far it’s been a few good days in a row but we’re prepared for setbacks and bad days.

What can I do? At this point, I’m not really sure. I’ve been told by a friend who went through a tragedy that sometimes just doing something and not asking is more helpful than asking, but I’m not 100% sure about that. Maybe I’m saying that because we’ve had a lot of good days, but I do enjoy hearing from people and knowing that they care so much about Cory & I.  But I honestly can’t think of anything we need right now.

Cory has said that he does prefer that people go through me for the info, talking about everything again and again is really hard for him. He tries to occupy his mind with his cooking magazines and books, reading, and coloring so he doesn’t over think what’s happening. I think he’ll take a dank meme or some other funny thing (think the Love in the Club puppet thing he was obsessed with for like 3 months https://www.youtube.com/watch?v=b90Cf6ARscc). He may not respond; there are tests, and procedures, and meetings with doctors that happen all day every day. Also know that I may not respond. I’ve been trying to keep people up to date (I hope this site helps) but I can only make so many calls/ respond to so many texts before I need a break.

Can I visit? Send flowers? Unfortunately, no. He is only allowed two visitors and they always have to be the same two and we can’t be there at the same time and we only have from 10am-7pm to be there. He is currently in the Cardiac ICU and cannot have flowers or outside food. I’m hoping we enter a time when he’s up for talking to people via zoom or facetime, but I don’t think we’re there yet.

What will change when he gets out? Cory is going to have some differences when this is all over, the biggest one is probably the salt. We love salt, on literally everything. Cory will be on a heart-healthy diet that includes low sodium and a limited liquid intake. I know a lot of people have asked if they can bring us food, which is so nice, but he can’t have food from the outside world yet. When he is home and things get better, we will be on a very low sodium diet, which will be super weird. He will now be the person he hated at a restaurant who asks for no added salt on their food and we will be the kind of people that figure out how to can their own tomatoes. Also, why is there sodium in EVERYTHING?

What about work? Cory and I are on hiatus from work and all other commitments. Being there for him and getting through this together is the most important thing right now. I hope we keep having good days and that things move in a positive direction, but we need to focus on his health above all else. Our amazing boss told us to do what we need to do, so Cory’s new job is to be a pincushion and my new job is liaison to Cory and to be at the hospital from 10am-7pm daily. He hopes to regain his strength enough to carry a 50lb box of potatoes up a flight of stairs again one day, but that day seems pretty far away right now. We’re taking it one day at a time.

What happened to the vampires? Okay so, they took Cory’s blood at LEAST twice a day at WMH and multiple vials. And a lot of times it was at like 4am, they would just sneak in and say, “I need some blood”. So that’s weird. And at St. Luke’s there’s also been a lot of blood draws, yesterday one lady took 10 vials! And he’s in a place called Garden Tower (which Abbie pointed out sounds like a castle). I don’t know if it’s time to call Buffy yet but I’m staying on alert. Also, Cory hates needles so so much so we’re all really proud of the gallon of blood they’ve needed and the four IVs he’s gotten.