Take II

DISCLAIMER: I started this blog in June when everything was fresh on my mind, and then I came down with the worst case of writer’s block. I would grab my laptop and a cozy blanket and plop down on the couch ready to finish writing, and I just couldn’t do it. The words weren’t coming to me, and I felt a heaviness around the blog I couldn’t understand yet. Looking back, I think a lot of it was related to living 10 months in limbo not knowing if things were going to pan out the way we’d hoped. We finally arrived in this happy, healthier place, but the damage of the journey to get there lingered. It rocked us. For 4 years, we’d been in this beautiful bubble of good health, and that bubble was violently busted. The reality of the downside of transplant had hit us, and now that we’ve seen the dark side, it takes more mental work to stay focused on the bright side. 

One of my personal goals for 2024 is to practice more gratitude, especially in the small things. It’s wild to me that I still dare to take them for granted some days because I remember our conversations in the hospital yearning for a walk outside, to curl up on the same piece of furniture together, and to go back to enjoying life together. None of the little annoyances of everyday life mattered in those moments.

I want to soak up every hug, every laugh, every meal, walks outside, deep breaths, and ordinary, uneventful days, because when it came down to it, nothing else had a fraction of significance.

So here’s the blog that I was only able to finish up by piecing together information from text updates, Danny’s MyChart history, and pictures from my phone.

 

We got the official call that there was an organ offer on June 13th. They were scheduling his surgery for June 14th. June 14th was officially one month of being approved for the transplant list. His 4-year Lungaversary from his first surgery was June 15th. Everything was eerily lining up in a way that felt so special. 

The day before we’d had a conversation with a coordinator about his listing details. His score on Jun 9th was 24.1855. After his poor 6-minute walk on June 12th, his score was 24.5005 with the median being around 20.7617 and the 90th percentile starting at 23.1799. With the CAS score being so new, they’re still working through any areas of concern, and OPTN allows transplant teams to submit any areas of concern to a review board. Danny’s team was working on this prior to getting the call. UNOS had his life expectancy without a transplant at 235 days, and his team believed that was much shorter, which was really tough to hear. So they were planning to put together a robust letter with literature, data, and test results asking them to adjust his score based on these other factors they’re seeing since the calculation isn’t perfect. They have done this a handful of times since Continuous Distribution launched, and they haven’t lost one yet, which makes me even more proud of them. The review board has 5 days to respond, but they don’t normally take that long, and in our case, they didn’t need to.  

The offer call is very formal. The woman let us know our surgeon had accepted a set of lungs for him. We don’t get to know anything about the donor, except that they were brain dead and their CMV status because that’s part of matching. We don’t know their age, gender, location, or anything else. That’s kept private. We’re also notified that the donor’s surgery was scheduled for 10 AM the following day. She asked if we had any other questions, and I remember saying, “I just want to confirm. Did you say a set of lungs?”  She confirmed, and I felt a huge weight lifted off my chest followed by a deep inhale and exhale. I wanted a bilateral for him so badly. I would have been thankful for a single, and he kind of wanted it for an easier recovery, but I always wanted him to have both. Then she let Danny know he had to give her a verbal, “yes” that he is accepting the offer, and he did.

We hung up and cried together for a while. Our minds racing with fear of the surgery, fear of the recovery process, relief that this 9-month journey might be coming to an end, happiness that the offer was here, and deep sadness for the donor and their family members. It’s a whirlwind. We were moved to the unit he was in for his first surgery (Shoutout B4/5) and set up in the room he’d come back to after surgery. The rooms on this unit can switch between ICU, IMC, and general level care so you’re not moving around to different units at different care levels. 

In case I haven’t mentioned it yet, we were still not allowed to stay together overnight. The hospital hasn’t allowed overnight visitors for adults ever since COVID, and there are very few exceptions to this.  We both surprisingly, and thankfully, got pretty decent sleep that night. The next morning, however, my eyes popped open the second they saw a slice of light. When I got to the hospital Danny was already listening to this “Transplant Vibes” playlist working hard to stay calm and peaceful. Danny’s parents arrived shortly after, and we all set quietly together waiting. Those quiet hours together before surgery were filled with so many emotions. I felt so ready for them to just get the show on the road yet so scared for them to actually take him away from me.

Finally, around 11:30 AM, the team came in to take him down to the OR. I gave a last-minute, positive vibe “You’ve got this. We’ve prepped for this” pep talk, we hugged and kissed him, and they wheeled him out of his room. All the same emotions from the hours before flooded the room again all at once, and while scary thoughts crossed my mind and tried to settle in for the day, I quickly acknowledged them and shooed them away to make space for all the things that could go right. I focused on how happy we were after the first surgery and how this could be the same experience. 

My next stop was to head downstairs with Danny’s parents and to meet up with my parents in the surgical waiting area. I checked in at the reception desk to get my buzzer for updates. It’s like the kind you get at a restaurant when you’re waiting for a table, but they send text messages on it. The first page is the most critical page to receive. At any moment, the surgery could be called off for a multitude of reasons, and we’d go back on the list. This would be a “dry run.” So getting this first page that lets us know surgery has officially started means the lungs are good and everything is officially a go! 

This finally came through at 1:15 PM.  The message read, “They’ve started surgery and all is well.”  THANK GOODNESS! 

Now we’d start figuring out how to stay busy the rest of the day, and I went back and forth on what the right thing to do was. We were told to prepare for a 12-18 hour surgery, which meant he wouldn’t be out of surgery until well after midnight into the early morning hours. The visiting hours were still in effect and the only exception they’d make is that I could get clearance through security to come lay eyes on him post-surgery. I knew I didn’t want to hang out at the hospital, because quite frankly, I’d been there enough in the last 9 months, and I couldn’t add any value to Danny waiting around. I could come back to see him when he was back in his room in the middle of the night, but I’d be sacrificing sleep that I had been desperately fighting to stay on top of. Not to mention, he’d be sedated anyway, and last but not least, in the spirit of transparency, it’s really hard to see someone you love fresh out of a really long surgery on a vent. So needless to say, I talked myself out of it and decided to take it easy the rest of the day. 

Danny had told us to go get lunch at Bar Taco at Hilldale. So the 5 of us went out for a really nice lunch, and then we went home to relax. I went to my parent’s house so I could be with them and the dogs while we got updates every 2 hours. 

2:53 PM - I got an update that everything was good. They were still waiting for the lungs to arrive, which was a little bizarre to us at first, but we trusted their process. Come to find out someone in the OR was reprimanded for calling all of the teams together to take Danny down prior to the lungs being there, and that’s why our update came so much later. Regardless, they were working on getting Danny’s body ready. They were anticipating having to get through quite a bit of scar tissue from the first surgery.

4:40 PM - the update was that the lungs were in the room with them, and that was it.  By this call, I’m wondering if the person making the call to me is excited or annoyed to be the one having to step out to call. I’m wondering if they draw straws to be the one making the call and if the short straw is a bad or good thing for them. I’m wondering if they know how much I appreciate hearing any kind of update they can give me. If they realize they’re my only connection to my husband. If they know how critical their contribution is to me and everyone I’m updating.

6:37 PM - the LEFT LUNG IS IN! They’re going to start working on the right lung.  

I ran home to grab some things to stay with my parents for a few weeks after I conned them into turning on their A/C thus ruining their streak of using cross breezes through the windows from the neighboring farm fields or cool, basement air they force upstairs with a fan to avoid turning on the air conditioner.

8:45 PM - the right lung is in, and they will start closing soon. 

10:11 PM - I answer my final call for the night, and it’s not my normal girl. It’s the surgeon himself.  They’re done.  The new lungs looked good, and they had been well-preserved in transport. He was on ECMO during the surgery, but he was already off. They had to “chisel” out the old lungs, which is a gross but appropriate word choice, but ultimately, the scarring was not as bad as some others he’d seen. He’d placed 4 chest tubes for draining, and they used cryoablation, which I’ll cover in another blog, to freeze the nerves between his ribs for pain management. His blood pressure and heart rate were great throughout surgery, and most importantly, his lungs were working well. His exact words were that it “went better than [he] dared to hope.”

We’d mentally prepared for a 12-18 hour, complicated surgery, and it was over in less than 12. I sent out my final update for the night and went to sleep. This chapter was closed, and the next day we would start a new one.

The next morning I called the nurses’ station on his unit prior to shift change to get an update on the night before. They said he did well through the night and was scheduled to get his first post-surgery bronchoscopy at 8 AM to check on his lungs with a camera and to check for any initial signs of rejection. If all looked well, they’d start trying to get him off the ventilator and breathing on his own.

The first step towards doing that was completing a Spontaneous Breathing Test (SBT). One of the risks of the surgery is damage to the nerves in the diaphragm and that could prevent him from being able to breathe sufficiently on his own. This test is basically how he proves he can breathe without the support of the ventilator, but the ventilator is still in place in case they need to turn it back on, and it was expected to last around an hour. The full testing process is more complex than that because they’re checking a lot of things in this process, but that’s a high-level explanation. 

We both remembered this from last time. It’s difficult for him to endure and difficult for me to watch, but we prepared for this test. Last time he tried writing things on a board to communicate during this test, but his wrists were restrained to the bed to make sure he didn’t try to pull the tube out of his throat so he couldn’t see the board and none of the letters made sense. The coordination wasn’t there yet. So this time we’d practiced some simple sign language letters beforehand so he could spell things to me.

By the time I got to him shortly after 9 AM, he was already weaning off sedation (Propofol) and they were about 15 minutes into his SBT. I held his hand, reminded him a few times when he was incredibly frustrated and confused that he was in the middle of the breathing test, and told him to just focus on his breathing. I turned on his Transplant Vibes playlist, and he started to understand what was happening and calmed down.  Shortly after he tapped my hand to indicate he wanted to sign something, and he signed “E-C-M-O.” My eyes welled with tears because at that moment I realized he was in there and clear-minded enough to ask questions about how he was doing. Four years ago he stayed on ECMO for several days after the transplant, and at the time I wasn’t expecting to go so many days seeing him sedated and on a vent. This time I was prepared for a few days of no meaningful interaction with him, so this was a welcomed surprise.

Through a smile and tears, I said, “No! You’re not on ECMO. They took you off at the end of your surgery. It’s the next day. It hasn’t even been 24 hours, and they’re trying to get you off your vent. So just keep breathing. You’re doing so good!”  

He raised his eyebrows in surprise and signed “O-2” meaning he wanted to know what his oxygen saturation was. I checked his monitor and told him he was at 94 and on a small amount of oxygen through a nasal cannula. These updates eased his mind. His furrowed brow softened, and he started doing his work and taking controlled deep breaths. 

Then he signed “S-H-U-F-F-L-E” because he was tired of the song, which made me laugh.

By 11 AM, his tube was pulled, and he was a free-breathing man. By 4:30 PM he was out of bed and in a recliner next to the bed. It was absolutely incredible, but it definitely wasn’t rainbows and butterflies. The Dilaudid made him very nauseous with movement, which is tough when all they want you to do is move.

The next day he was already in his chair by 6 AM, and they switched him to Tramadol for pain management for less nausea. His x-ray and lab work looked great, and by 2 PM he was up doing his first walk around the unit.

Day 3 (Saturday) was mostly uneventful. He did his walk but otherwise was just resting and recovering. We learned he was the 4th re-lung transplant in the nation for the year, and the year prior they’d only done 19 total. This day is also when I started to notice the effects of the high-dose steroids kicking in. 

Day 4 was more eventful with his first post-surgery bowel movement (IYKYK). He was completely on room air, and two of the four chest tubes came out. The steroids were in full effect. His eyes have never been wider, and it still makes me laugh to think about it because he had no idea how wide he was holding his eyes open while simultaneously talking about being tired.

Day 5 (Monday) he was moved to another room down the hall. A new critical patient was coming in, who needed this room closer to the nurse’s station. This was a bummer for selfish reasons because one thing I don’t think I’ve talked about here is that we always get a room with an interior view. Instead of looking at the outside world with trees and cars and people, we end up looking at an atrium with other hospital rooms across the way. It was that way with his first surgery, and it was that way during most of his hospital stays, especially the extended stays. It was going to be that way again. It’s hard to not see anything other than “hospital” when you’re mentally drained. It’s especially hard when you walk down the halls seeing those rooms filled with sedated patients, who can’t even enjoy the window. On desperate days, I test the waters with the nurses to see if they’ll play musical beds. Spoiler: it doesn’t really work that way.

One good thing that came out of day 5 was a swallow test, which meant he could eat food again. He was also starting pulmonary rehab.

On Tuesday (Day 6), we had to retake our transplant education quiz. Every patient and caretaker takes the quiz to make sure they remember all the important things about being or supporting a transplant patient. We’ve already been living it for 4 years so we aced it.

He had a bronchoscopy on Day 9 that went well, and his last chest tube was removed. He was officially disconnected from everything, except the GJ tube for night feeds to continue packing in calories. We had two of our favorite transplant members drop off Crumbl cookies this day too. 

On day 10, he had his first day outside in the healing gardens, and on magical day 12 (June 26), he was discharged! 

Going home was a really exciting time. He’d been in the hospital for the better part of 7 weeks, and we were going straight home. Last time we had to stay within 30 minutes of the hospital for 2 additional weeks after discharge, and it put a bit of a buffer between the hospital and our return home. The downside to this was that Danny was comparing being home the last time to being home this time. He wasn’t comparing it to the time at our “halfway house.” So he had quite a few discouraging days, where he didn’t feel like he was recovering the way he should.  The truth was that he was recovering exceptionally well. His current lungs are an even better match than his last ones, according to the team.

 

As I write this blog, we’re 7 months post-transplant. A lot of the minor details are fuzzy in my memory. I know at some point during the hospital stay he did a few rounds of ATG again in an effort to prevent his body from creating antibodies. They said the data wasn’t great, but it was enough to try based on his history.

Since then he went through a few weeks of painful blisters on his hands and shins from a round of preventative (pehaps unnecessary) Doxycycline in the hospital. 

There’s suspicion that some nerves in his abdomen sustained some damage during the surgery, because after a gastric emptying study, more esophageal manometry and a 24 pH impedance they found his food was moving a little slower than it should. He opted to wait and see if that resolves on its own, and today it’s really hit or miss. The muscle there is definitely weaker in appearance and feel.

In September, he had a pneumothorax, which resulted in a hospital stay and chest tube. I posted about that one on Facebook because I shared a video where you could see his chest puff in and out when he breathed. 

In November, he was hospitalized for acute cellular rejection, which they hit with high-dose steroids and nipped in the bud, and then we both got Covid around Thanksgiving.

Since then life has been returning to the baseline we’d hoped for. We moved homes. We went to as many Farmers Market Saturdays as we could. We went to Door County in the fall. There’s no doubt we’re still reeling from the experience, and we’re changed in so many ways because of it (good and bad). But we’re here, we’re together, and we’re grateful for another day.