Another Day, Another Hospital Stay

Spoiler Alert: At the time of writing this blog, I am actually sitting next to my freshly transplanted husband, but I have some catching up to do so I’m going back in time!

*Insert tape rewind sound effect*

At the beginning of April, Danny started feeling rib pain that we thought was from excessive coughing. He started feeling shortness of breath as well, so we went to the ER to get him checked out. They did a CT with contrast and found blood clots in the lower lobes of his lungs (pulmonary embolisms/PEs). These clots can cause pain while breathing and difficulty breathing so that explained the drastic decrease in function he’d been experiencing over the last week or so. Clots are scary things, but the clots in his lungs wouldn’t break off and go anywhere else, which was good. The treatment for the clots was just a blood thinner, which would prevent the clots from growing, and the body would naturally break down the clots over time. They admitted him to start him on a continuous Heparin drip and to do further examination.

In the morning, we learned he tested positive for Rhinovirus (common cold) and parainfluenza 3 (another virus with symptoms similar to rhino) but that was just a fun little sideshow. An echocardiogram of his heart found a 2 cm clot on his tricuspid valve. This was a big deal because clots can cause a multitude of issues, like heart attacks and strokes if they break free. They quickly got a team together the following day and performed an Angiovac, which is, to quote the doctor, “ a dry/wet vac for the heart” to suck the clot out. They access the body through the neck or groin with a tube that’s of a size you don’t even want to imagine going into your neck or groin and pull the clot out! The procedure went really well, but the stay was rough. We were in an interior unit with no windows so there was no natural light to help us mentally.

It was determined that this was more than likely caused by the vortex port he had placed near his collarbone for the Photopheresis treatments. During a previous treatment, they had to break up a clot on the port, which could be where it started, but the piece entering the heart was still too close to the valve, and it was irritating the heart. They ended up doing a revision a few weeks later during a subsequent hospital stay to adjust the positioning of the port.

The next few weeks consisted of Danny’s lung function decreasing drastically and us fighting against the mandatory vaccine he faced in order to be evaluated for transplant. His lung function dropped 15% in one month, and we knew we were running out of time. He ended up getting the vaccine at the beginning of May so we could start moving on the eval. That day was horrible, and the following two days were worse. He declined very rapidly from that Monday to Wednesday, and by Wednesday (May 10) he wasn’t eating, drinking, or getting out of bed. His transplant team had made prior arrangements to admit him that day to expedite his transplant evaluation, but when we finally had a room number, I couldn’t get him to the car. He was so scared to move independently; convinced he wouldn’t be able to catch his breath. I ended up calling 911 to get an ambulance for transport, and luckily they took us right to our hospital. You don’t always get to pick where you’re going on an ambulance if there are multiple hospitals around, and then you’re playing a nightmare game of transfers. The whole time we waited for the ambulance his anxiety spiked. He was so sure he’d held out way too long and missed his window for transplant. He knew it wasn’t worth dying over and was overridden with guilt. 

This topic of anxiety, regret, and lack of control in life was recurring and so important for both of us to address. When Danny’s condition started to worsen and I could see basic activities being stripped away from him, I started to worry about his mental stability. We both knew what he was facing with a second transplant. We’ve both seen his condition worsen and get better and then worsen again. I had no doubts he could handle this challenge physically, but his mind worried me. 

When you have nothing else, you have yourself. We spend so much time on our physical and so little on our mental, which is weird because your physical body failing you is not a matter of if but when. Our bodies are always slowly deteriorating. So when that happens, what will you have left? A recliner can lift you up and down. A walker or wheelchair can help you from room to room. Medications and mood stabilizers can be useful tools, but those too can cause unwanted side effects and can be scary long-term solutions for some people. (I’ll shamelessly plug another documentary to watch: Take Your Pills: Xanax)  This documentary in conjunction with my constant pressure to try new techniques that I more than likely scrolled past on TikTok allowed Danny to be in a much better place mentally. He opened his mind to the possibility of him being able to be in control, and it clicked for him. He found techniques that worked, he believed that they worked and he found stability. Breathing exercises can be frustrating when you can’t breathe, but he did them along with facing the sun on nice days, listening to LoFi instrumental music, aromatherapy, meditations, and tapping exercises. 

Anyway, let’s go back to the ER on May 10th.  As I said, we already had a scheduled admission and a room number, but since he’d arrived by ambulance there was a protocol to follow so he had to start in the ER. They also wanted to assess his current state to determine what level of care he would need, which ended up being intermediate-level care. They started him on a bag of fluids because he was dehydrated, as well as a high-flow nasal cannula. Both of these things made him a new man. Within a half-hour, his appetite returned, his O2 saturations were improved and he was a slightly happier human. 

We moved upstairs to a tiny room with a tiny window that looked at another row of patient windows, and we stayed there for two weeks. During that time they did Danny’s transplant evaluation, his port revision, and placed a GJ tube for tube feedings. The GJ tube was welcomed for several reasons. He had a low appetite from his body focusing efforts on oxygenating organs instead of signaling for food, he was struggling to eat enough calories even to maintain his weight, and he’d be able to start nutrition earlier without having to go through another NG placement post-transplant. 

His evaluation was completed and the transplant board approved him to be on the transplant list on May 17th. The call letting us know he was approved was very emotional. We felt so thankful and relieved but overwhelmed by the unknown at the same time.  In 2019, we waited a little over 3 months for lungs, and the average wait time this year was around 1 month. So our plan was to go home and wait. 

He was officially on the list. He was getting over 900 calories/night through his Kate Farms tube feeds. He was breathing very well on the high-flow, but that’s too demanding to go home on. So his team worked really hard to get him approved for a device called the Life2000, which is a portable ventilation system that can offer similar support as high-flow. Getting it into our possession was a logistical nightmare with a lot of red tape. Through the help of several different departments with a lot of determination, they got it worked out.

Discharge was scheduled for May 24th, but things got tricky quickly…

Danny was already on Eliquis, a blood thinner, for the PEs in his lungs, and he would need to stay on a blood thinner until those were gone. Blood thinners and major surgery aren’t really besties. Luckily, there are some blood thinners that can be reversed fairly quickly so your blood coagulates better and you’re less likely to bleed out. The team made the decision to switch him from Eliquis to Warfarin, but Warfarin can take 7-10 days to reach a therapeutic level in the body so you have to “bridge” it with another short-acting blood thinner. We landed on Lovenox as the bridge option, which meant Danny was going to have to give himself shots in his belly until the Warfarin was therapeutic. 

THEN we learned on discharge day that Lovenox was not an acceptable bridge option according to UNOS, so we had 2 options, both of which involved waiting for Warfarin to reach a therapeutic range (7-10 days)

1. Go home, stay on the Lovenox, but temporarily delist from the transplant list, which also meant missing out on potential offers.
2. Stay in the hospital, bridge with a Heparin drip, and stay active on the list in order to be eligible for organ offers

Even though we both wanted to be home together so badly for the Memorial weekend, there was no way we were delisting for any amount of time. The decision was easy, but still very sad to make. Thankfully we got moved to a nicer room down the hall with a big window and lots of natural light. It took 6 days for his INR to reach a therapeutic range, and we were finally able to discharge him on May 30th. The Life2000 rep came to set Danny up on his device at the hospital for the drive home, and we went home to meet a separate Life2000 rep to ensure he was comfortable and had the right settings.  We were ready to fly solo at home…or so we thought.

We were only going to stay home if Danny felt comfortable breathing and safe to move independently at home. We were doing meds and vitals in the AM/PM (blood pressure, pulse ox, temperature), tube feedings overnight, and trying to get as many calories in orally during the day. The Life2000 was helpful but we didn’t have all the settings dialed in so there were aspects of the support that didn’t feel like enough for him. This made Danny feel like the device couldn’t support him the way he needed, and he decided to be re-admitted to the hospital on June 2nd. Later a rep came to check out the device and adjusted some settings that made a big difference in his experience allowing him to be more independent in his hospital room at least. 

The following 12 days were pretty low-key. He was back in the same tiny room with the tiny window that sucks the life out of you, but he was breathing, eating, and moving independently. We visited with family and friends, watched shows including Jeopardy Masters and Jury Duty, played Hand and Foot and Five Crowns, ordered food, sat by the window overlooking the healing garden, gave Danny a haircut, and patiently waited for the call.

Whew… was this one long enough?