Fevers and Night Sweats

It’s been a little over three years since Danny’s transplant, and I haven’t written a real update in some time because we just haven’t had an update. No news was good news over here. Don’t get me wrong… a lot has happened. We got married. We survived a pandemic. We survived both getting Covid at the same time. We got a second dog. We sold our first home and bought a new home that we’re remodeling, which sits on six acres. We traveled and went on vacations. We enjoyed life. However, as we’re wrapping our first adventure with rejection, I thought it would be appropriate to document and offer an update.

Let’s go back to the beginning of September. Over Labor Day weekend, we took some extra time off and used the long weekend to clean out our pole shed. There was a lot in the building from the previous owner that we wanted to clear out to make room for workspace and our home gym equipment. While we don’t know for sure (and may never know), we think that activity is more than likely what triggered some immune response in Danny’s body.

The following weekend, Danny had a low-grade fever on Friday (9/9), and he sweat all night long. The fever broke and was gone Saturday morning (9/10), but then it came back Saturday night at 100.7. The threshold to go to the ER as a transplant patient is actually 100.5, but outside of the fever and night sweats, he was feeling completely fine. No trouble breathing. No loss of appetite. No productive coughing. No coughing at all. So we decided to lay low, relax on the couch and go on #FeverWatch…

Saturday, 8:50 PM - 100.7

Saturday, 10:00 PM - 100.2

Sunday, 6:45 AM - 98.6

Sunday, 11:20 AM - 99.0

Sunday, 2:30 PM - 99.0

Sunday 5:02 PM - 98.8

Sunday, 8:07 PM - 100.1

Sunday, 9:13 PM - 100.3

Monday, 1:20 AM - 99.2

Monday, 3:00 AM - 99.3

By 3:00 AM Monday morning (9/12), Danny had had it with the night sweats, and he called the on-call coordinator, who suggested we go to the ER based on his symptoms. So we loaded up and headed to St. Mary’s ER. Whenever a UW Health Transplant patient goes to another hospital, the UW Health Transplant team is contacted, and they ultimately run the show from that point forward. It’s just that specialized. So we start out with lab work, blood cultures, a chest x-ray and some fluids. The initial diagnosis was pneumonia in the left lung. You could see the lung was just a little cloudy in the films, but it was pretty localized in the upper left side, so that was promising.

…but this is the moment that things went a bit haywire.

The two hospital teams coordinated, and the ER team let us know the plan was to admit him, which was not ideal but to be expected. As mentioned, UW Transplant wants their patients at UW Health, but the hospital was already at critical capacity along with their nurses planning to go on strike the next day. So we landed on St. Mary’s sending him to a room upstairs following the treatment plan laid out by the UW Transplant team.

St. Mary’s night shift was on board. They accepted the assignment. However, they accepted on behalf of day shift, and the day shift doctor did not accept the assignment. It’s unclear if they were uncomfortable with Danny being a transplant patient, or if they were uncomfortable with doing whatever UW said to do, but they requested that Danny be transferred to the St. Mary’s in Madison.

The next three days were mentally painful. We were in a room at St. Mary’s with the team there waiting for direction from the UW Team, but we kept getting feedback that the UW team was waiting for a bed at UW to transfer him. They did treat Danny for the pneumonia with IV antibiotics, but that was about the extent of the treatment. So the painful part was trying to understand why we were paying to sit in a hospital room with little to no direction, plan or goals.

Monday, we were patient. It had been a long day.

Tuesday (9/13), we were a little less patient.

Wednesday (9/14), we were out of patience.

It felt like the worst game of telephone, where communication we were getting directly from our UW team was not the same messaging being relayed to us from the St. Mary’s team. We felt stuck in the middle of poor communication, which was not intentional on either side. I’m not bashing the teams. I know both hospitals and teams are great, but we felt like we were falling between some cracks and finally had to speak up to advocate for our care plan (...and our bank account). Ultimately, UW wanted Danny at their hospital, but their hospital was at critical capacity with no open beds and limited staffing, and we needed them to acknowledge that Danny sitting in a bed in a different hospital with no action was not a better option for us than him sitting at home with no action if they couldn’t pull off a transfer. We have a good relationship with our coordinator, and after sharing our perspective on the situation, he was able to get Danny discharged with a plan to come in for a clinic visit on Friday to check on him. Praise the Lord! We were going HOME!

Friday (9/16), we head back to Madison to the brand new transplant clinic at UW Health. It’s beautiful, by the way! We met with our normal Transplant team, and after looking at his x-ray from that morning, they just weren’t comfortable with the results of the antibiotics from that week. They also didn’t want to wait until the following week to find out what was causing the cloudy films. The only way to diagnose at this point is a bronchoscopy with biopsy, and the only way to get a bronch on a weekend is in-patient; therefore, he had to be admitted. So we were back in the hospital, but this time working directly with our team and not through a third party.

The Saturday bronchoscopy went really well. Early on, the bronchs were something Danny dreaded. The sedation made him very nauseous. With it normally being an outpatient procedure, they monitor to ensure he’s stable for about an hour, and then we’re wheeling him out the door barfing into a giant blue condom-looking bag (IYKYK). However, we’ve learned now that the trick for his body is Benadryl! He’s very sleepy afterwards, but he’s not pukey, and that’s a win for all of us.

Sunday we were just waiting for results. No one had said the “R” word out loud yet. We know his body will never recognize his lungs as part of him. They’re made of different tissue. They’ll always be made of different tissue. They’ll always be foreign objects in his body in the eyes of his immune system. We all knew it was a possibility, but no one was speaking it into existence. #Voldemort

The results of the bronch came back on Sunday (9/18), and there it was.

Cellular Rejection.

His immune system’s T-cells were attacking the lungs. They’re doing what they’re designed to do, which is kill foreign objects in the body. So they started Danny on 500 mg/day of IV methylprednisolone, a steroid that goes on a mission to suppress the t-cells. He had high doses of steroids right after surgery, and the side effects, in conjunction with all the other new meds, caused him to act completely out of character. This time he had a lot of fluid retention, as well as a hard time sleeping and regulating his mood. The 500 mg per day dose was for three days, and as soon as the dosage came down, the side effects started to stabilize.

We’d spent the last three days doing our best to pass time. Danny was still feeling really well, so it was hard for him… He felt trapped and was going stir crazy. We spent a lot of time outside in the gardens. We’d go on walks through the halls, until we’d reach “Staff only” or “Do not enter” signs. We ended up getting a good 30-minute route laid out that we’d take a couple times each day. We played several rounds of Hand and Foot, Dutch Blitz and Five Crowns. We ordered Door Dash. We watched Netflix. We made the most of what we had to work with.

To add insult to injury, I was still driving back and forth from our home to the hospital, which is around 45 miles each way. Due to Covid policies, I was allowed to visit but only during visiting hours and not overnight. It was demanding and exhausting. More than I ever thought simply driving could be, but it was so important that we were together. Our employers were patient, understanding and merciful. Our family members took care of our dogs in more ways than one, brought in packages, put away the seemingly never-ending grocery deliveries I’ve subscribed to, did our laundry, and more so I could drive back and forth to be with Danny as much as possible.

Day 3 was Wednesday (9/21), and we were SO ready for discharge. He had finished treatment, and at that point, the plan was to monitor labs closely over the next weeks and months to ensure everything was on the right trajectory with no continued signs of rejection. I’d gone home and cleaned everything in preparation for his homecoming. His immune system was even more suppressed than usual with the steroids, so it was important that he felt comfortable coming home to a really clean space. He was all packed up, ready to go. We were just waiting on Pharmacy to bring some take-home meds, when the nurse came in to tell us discharge had been delayed. They briefly mentioned “Antibobdy rejection” and that they’d be back in a little bit to discuss further. We waited an agonizing hour making the mistake of Googling things in the meantime, which only raised more concern. I don’t recommend doing that!

The Physician’s Assistant came back in, shut the door, and asked if she could sit down. If you didn’t already know, you don’t EVER want them to come in and sit down. She let us know that discharge was officially cancelled, and she walked us through Antibody Rejection. It’s not uncommon for both types of rejection to be present, but you do have to treat them completely differently.

High level: Antibody Rejection is where the body starts creating antibodies specifically designed to attack donor lung tissue. They call them “donor-specific” antibodies. Let me paint a picture, because I needed this exercise to understand exactly what was happening in away I could process.

Imagine little security guards doing security checks in the body. They report back on their findings, and if they find a security breach, they hit the fire alarm and recruit help from the immune system. The immune system assesses the threat and sends out a special team to dispose of the threat. In most cases, they don’t go out all willy nilly just killing every living cell. These special teams have very specific orders, and in this case, the team is composed of those “donor-specific antibodies” that his body has generated. Their mission is to destroy the foreign body (his precious lungs), and our mission is to remove as many tainted antibodies as possible, render any remaining antibodies useless, and stop the body from producing the bad antibodies.

We were gearing up for nine more days of war. (Spoiler: it ended up being 10) It was a punch to the gut. I knew Danny was barely hanging on mentally after already putting in nine days. It felt like we were starting all over again, and the little things that brought him joy over the last nine days had lost all value.

The good news was that the treatment plan was logical enough. It made sense. The next morning (9/22) they put in his central line, which is a catheter placed in a vein that goes near or into your heart. It’s ideal for long-term IV therapies and would keep them from having to stick him over and over again. Danny’s central line was placed in his neck by his collar bone, and it made me a little queasy to look at. When he came back from having it placed, I asked if he’d looked at it yet. He said, “No”, and I said, “Okay..maybe don’t…”

The first weapon was going to come in the form of Plasmapheresis (plasma exchange or plex). They hook his central line up to a big device that circulates his blood out, spins it to separate the plasma from the cells, and sends the blood back in with donated, anti-body free plasma. This is followed by an IV Immunoglobin infusion, which puts concentrated, donated, healthy antibodies back in his body. Deplete the bad, so you can replace with good!

Each Plex session removes 2/3 of the antibodies in his system. For the 1/3 of the antibodies that are still in the body, Plex and IVIG was followed by a weekly Rituximab infusion, a lab-made antibody that comes in, puts one of the bad antibodies (CD20) in a chokehold and makes it go to sleep.

The Plex and IG was done every other day for a total of five treatments; however, it’s only done on weekdays. So the therapies were started right away on Thursday and Friday and picked back up on Monday, Wednesday, Friday the following week. However, this left Saturday, Sunday, Tuesday and Thursday as days with no treatment and no real goal for those days other than keeping the central line safe. We continued our daily routine of entertainment on those days, and marked each day off on a calendar that we had taped on the door to show how far we’d come and how few days we had left.

Finally, on Saturday 10/1, there were no more therapies, no more tests, and he could finally go home! They’d monitor labs and do a bronchoscopy with lavage and biopsy in a few weeks to check on remnants of rejection. Discharge didn’t mean the rejection was done. It just meant we were free to go home and wait to see if everything worked. 

Dare I say, “Hurry up, and wait”?