I’m going to mostly stick to the thoughts and emotions of the day in this one. This one will serve as a peek into my head and soul for anyone following to know what the day was like as my personal experience.
To read the narrative of the day → How a Dry Run Happens
For those who don’t want all of the details of this post or are busy, I wrote a TL;DR at the end.
June 9, 2017
Since I now sleep downstairs in my new-to-me, free recliner for night feeds, I can wrap up watching DVR shows or explore Netflix and have just started watching the Sherlock Holmes show with Benedict Cumberbatch. Being one episode in and having fallen asleep a couple of minutes into the second one, I was very eager to continue. I had settled into our new routine on the list and happy to have something to look forward to other than transplant.
My body had other ideas and made me realize rather quickly that it was time to rest and I decided I needed to prepare in the event that this weekend was my weekend. I’ve had several disappointing weekends as other people in Tampa got the call, some listed after I was. Not that it’s a competition, but we do all want and need new airbags, and it’s impossible to be 100% happy when you don’t get relief.
97% happy, sure. but there were several times I’ve woken up sad and have checked my phone to be sure I didn’t miss my chance. “Another night without a call [sigh],” was an off and on emotion.
It was with that quiet expectation of a weekend call that I quickly slammed into sleep Thursday night. The last thing on my mind was the phone ringing that night.
2:16am – [phone rings]
When I saw that the call was the Tampa General 24/7 clinic line from the lung transplant unit, I immediately knew what this call was. I wanted to scream for joy and excitement, but I answered the phone instead, so that’s probably why I sounded so chipper.
The excitement reading hit uncharted territory. Then Shari the coordinator said words I’d been dreading the possibility of hearing when the call came: “high risk.” We had already agreed to turn down any offer of high risk lungs until I was really dire, like no longer going out and participating in life with the family on a limited basis. Much unlike myself, I didn’t interrupt her and say, “No thanks.” Maybe it’s because had so calmly continued with confidence to tell me that she had to read me some language about it.
My heart had sunk clear into the chair and I was close to breaking down, but some of the circumstances didn’t sound so bad and then she said that the lungs had already been tested for all of the infectious diseases and they had passed. The head pulmonologist, Dr. Patel, had already approved the lungs for me and me for the lungs. I’d already passed the blood and tissue type match, as well as the size match.
By now I was upstairs with my wife and had Shari on speaker. My wife was immediately concerned about them being high risk lungs, per our agreement. I asked Shari how close the tissue match was to get a better feel for the desperation involved in this decision to pick me for high risk lungs. “100% match. You don’t have any antibodies the donor doesn’t and he doesn’t have any you don’t.” This is an ideal situation to avoid excess risk for rejection of transplanted lungs.
When we hung up for a brief break to discuss the matter privately, I had almost for sure made up my mind, but I was open to a complete “not a chance” stance from my wife out of concern for me. My first statement was, “I’m not being emotional about this because I think it’s a risk assessment issue.” As soon as Shari said that they test high risk lungs for these things but don’t test regular donors, I almost changed stance that I preferred high-risk lungs.
Within a few minutes, I had sold my wife on the risk factors angle so we proceeded with acceptance of the offer. My excitement was full blast. We quickly conferred on our plan to get to the hospital and people to our house and set to it. I came downstairs to start my breathing treatments like I do every morning, except it was only 3am and I was WIDE AWAKE. I was giddy, jumping inside, and my mind was racing a million miles per hour about the prep we’ve done for the house and what I needed to do for the business. I decided that 3am wasn’t going to be a time to get anything done and just posted to each social media and played phone games to try to calm down… but it was more like trying to not explode.
Within an hour my wife’s parents arrived to stand watch over the boys and I finished packing my backpack with my laptop, glasses, and charging cables. Oh! I needed to swap out for a full oxygen tank… one should do for there and back. I had a couple of minutes with them before we left and I said, “So this is what it feels like!” We had one last hug before going out the door and I almost broke down from the excitement. At that time of day I was still prepared for the 50/50 chance of any call being a dry run, even though I didn’t want to dwell on that.
Have I mentioned that I’m an optimist?
In the narrative, I said that in the car I experienced every emotion every 3 minutes. I was the perfect picture of overjoyed at the offer of turning back the clock 30 years on my breathing ability. Many CFers have their transplant years before that length of time, but for me that was just going back to my first year of Little League baseball when I didn’t have any limitations on my play because of my lungs.
The possibilities of new activities or resuming old activities was too much to bear, so my thoughts shifted to the donor and his family. Somewhere a family had lost a son. Maybe a husband or father or uncle, probably in the prime of his life. They were mourning his death or maybe processing their decision to donate his organs if he wasn’t a registered organ donor. Please become an organ donor so your family doesn’t have to make that decision. Here, do it now if you haven’t already.
I felt my eyes water up and chin quiver several times on the ride in. It’s a really good thing I wasn’t driving because I was barely paying attention to the road. When we pulled into the parking garage and got out for what I was hoping was my last walk in with my old lungs, I cranked up the oxygen for walking speed. My wife asked if I wanted to go slowly. “No, I want to remember how much this sucks with these lungs.”
In the ER
I am completely serious when I say that when I rounded the corner to the ER front desk area, I wanted to stop and throw my arms and yell at the top of my pitiful lungs, “I HAVE ARRIVED!” However, being the genius that I am, I knew this would embarrass my reserved and proper wife, so I chose a method that would retain her as my primary support person.
As we talked to the security guard about his girlfriend with CF being 16 years post-transplant, we were both thinking that his being there was totally a God thing. The odds are astronomical that I was abnormal and divulged to a non-medical guy why I was there and that would happen to not only be in a relationship with someone with CF, but that they had had a double lung transplant at this hospital 16 years ago and that he was telling us about it.
When we got to the “cry room” to wait for transport, I slumped down in the seat and tried to calm down. I was keenly aware that my heart was doing a solid 130-145, up from my new normal of 90-105 while listed. This was also when all of the emotions finally hit my wife… and so did her bladder from breakfast. I totally should have walked to my room because I was still bouncing off the walls with emotional energy that needed to be burned off. I was hoping she’d wheel me past the surgery unit and CTICU and the waiting room to ask to take some photos more freely, but we stayed on the floor below those.
In the room
I was eager to get going when I got into my room based on the many stories of those who have come before me saying it’s a flurry of activity with no time to breathe. There was some concern for a few moments when the doctor’s orders didn’t come in for a solid hour or more. Was this the end of the run already? By the end of the day, this was my 2nd biggest moment of doubt that surgery would happen. It just seemed absurd that I’d have a room ready but no orders for the tests they needed to proceed with for a noon surgery. In the end, it was plenty of time since we started the long wait by 7:30am.
As we were getting the full story about what happens at the donor hospital, it really humanized the gift the donor and his family were making. A 2-hour flight away, someone had an injury or health event that left them brain dead in their twenties. With the body being cared for as if he was still able to recover, and being harvested in as clean of a surgery as if he was alive, I was coming as close to being connected to a donor as possible before transplant.
Things became really quiet before our friends arrived because no nurses or doctors or coordinators came in or called. At this point, we were just waiting for 2:00 to roll around. I was mentally playing games with the time and guessing what time they’d take me down to pre-op. Every 10-15 minutes I would prepare myself for another delay or cancelation of the entire show. As the hours dragged on, my heart would race and calm down over and over.
By the time we had visitors around 12:30, it was close enough to show time that I had mostly pushed out any emotions of doubt that we were going to go through with this in a few hours and that I was about to be put to sleep and either 1) wake up in disappointment with a last-minute no-go, 2) with new lungs, or 3) with a new body that is no longer here.
I tried to be present with our friends, but my brain was multi-tasking like it’s never done. I somehow conversed and answered questions and conveyed complex procedures all the while completely running through each possible scenario of the next 48 hours in my head.
- What time will they tell me to wash up?
- What time will they give me happy juice to calm down?
- How do things go in the OR as they prep you?
- How soon will they knock me out and just begin preparing my body for receiving this gift?
- and the list goes on and on and on with things I won’t know until we get a full pass at this.
When it was quiet again, I was reviewing the lessons from my men’s group study on Knowing God by J. I. Packer because there have been so many good lessons in it that have applied to my transplant journey. While I was guessing this or that as a sign that this was The Call and not a call, I eventually remembered the generality of this quote,
We can trust him and rejoice in him, even when we cannot discern his path.”
I was keenly aware of how alive and full of life and hope and love I was in the midst of the greatest tumultuous day of unknown variables and outcomes in my life. Still today, Sunday as I write this portion, my wife has been commenting how I’m acting strange. It’s interesting how she said this every time I was laughing and having a great time… pretty much doing nothing. Something changed Friday and I still can’t put my finger on it.
I didn’t have too long to continue recalling Packer’s points because family arrived next and needed a bit more filling in and updating than social media got.
A day of updates
Then 2:00 rolled around and I knew we should hear something about the team at the donor’s location, but I have learned much patience and waited until 2:30 to call. We were told the donor surgery was pushed back to 4:00, so my surgery time was going to be 6:00-ish.
I can wait.
Ohhhh, and wait I did. We posted updates as we got any and kept people up to date in the comments. I kept busy enough by posting to Twitter, my Facebook stream, and Instagram, as well as keeping up with comments from our private page.
The Fellowship of the Lungs
In the quiet of the room – our family knew that with us both being introverts and this being a waiting game, we just want to sit in silence and distract our minds in our own ways and strike up conversation when we wanted to… so I continued to ponder Packer’s lessons and remembered the section on promises.
A fixed, constant attention to the promises, and a firm belief of them, would prevent solicitude and anxiety about the concerns of this life. It would keep the mind quiet and composed in every change, and support and keep up our sinking spirits under the several troubles of life… Christians deprive themselves of their most solid comforts by their unbelief and forgetfulness of God’s promises.”
It felt weird to be simultaneously preparing myself for surgery and disappointment. As the time drew nearer to 4:00, my wife’s earlier comment to me about already “being attached to these lungs” being offered had really settled in with me, too. However, the lack of news is something I don’t like (as we learned on our adoption journeys) but it seemed equally likely that no news really was good news. Let the team work and then send word that they were getting on a plane.
Then at 4:20, my nurse came in and said that the team planned on taking me down to pre-op at 5:30. I was to wipe down with special body wipes. I really don’t like using them because they make your skin sticky and gross, but I’ll do just about anything for new lungs, as evidenced by a second heart cath with no sedation and getting a feeding tube.
5:30! An hour away! “Is this really happening?” Crap, this is hard to write, knowing it didn’t. Time to look at the last Packer quote again.
At 6:00, she came back and said that Mitch, the lung transplant coordinator was standing at the nurse’s station with his phones out and staring at them for the call to come in from the donor team. So far, so good, as far as they knew. I was ready to jump up and wipe down to go get some new lungs. I pictured Mitch standing there, willing the phones to ring with a green light to take me down to surgery. Everyone wanted this to happen.
When one of the transplant pulmonologists came in at 6:15, I was searching her face for a hint about what she was going to say. I expected the nurse or Mitch. Was there a decision to make? Was it going to be bad news that shouldn’t just come from a nurse getting trickle-down information? When she laid down the news that the lungs didn’t look good once they got them out of the donor, it was like one of those Roadrunner black holes appeared at the bottom of my insides and everything fell through. A few seconds later, everything was back in place and I was okay, so I looked at my wife’s face to see how she felt. Disappointed but not devastated.
Hmmm… maybe this was okay, then. The surgeon did just save me from getting lungs he wasn’t comfortable with. I’d rather do this multiple times than get lungs they don’t like. I looked around the room and everyone kinda sagged their shoulders, did a big sigh, and we started figuring out dinner. I last had a yogurt at 3am and I could have easily pounded back 3,000 calories in Taco Bell right then and there.
As I ate the sandwich the nurse brought me from the unit’s kitchen, I became more and more okay with things. This happened for a reason, least of which was protecting me from sub-par lungs, but the full extent of which, I’ll never really know. I do know that the day brought prayer teams in from several churches, including my own, very large church, and everyone listening to a radio station in southern Illinois.
They offered me a wheelchair to leave. No, I walked into the hospital and I’ll walk out. I was quickly discharged and we all walked a much shorter walk to our cars, except I was still flipping between being somber and feeling so alive.
The drive home
Before we even got out of downtown, we had deconstructed the day as a big win. Our months of planning with our support team to get us to the hospital, take care of the boys, and get to the hospital to be with us before and during surgery had worked without a hitch. There was a request to call during normal business hours next time, 🙂 but that comes with its own logistics issues getting everyone in place during work. I’m sort of bracing myself for the next call to come right before one of the rush hours or when someone is sick.
I ran the day through in my head at super speed and realized that it was a really, really good day with my wife. We were closer than in years and really enjoyed the time together. When it’s likely your last day with gross, diseased lungs, everything is great. Hardly anything irked me in the slightest, including the delays and endless waiting with no food or drink.
I had several really nice texts with some of the guys in our small group and was encouraged that my day was also an encouragement to them. It’s really comforting to know when you have such great friends in your corner. Without this issue happening now, it would have taken them many more months than it did for people to know that I have CF. Without the transplant, we wouldn’t have bonded so quickly because I’m an introvert. I felt so much peace about coming home that I fell asleep a few minutes away from home.
I soon remembered my favorite quote in the book up to this point. After referencing Romans 8:28 (which happens to be my life verse), Packer says (bold emphasis by me where I highlighted and underlined):
Not just some things, not, but all things! Every single thing that happens to use expresses God’s love to us, and comes to use for the furthering of God’s purpose for us.
This, so far as we are concerned, God is love to us—holy, omnipotent love—at every moment and in every event of every day’s life. Even when we cannot see the why and the wherefore of God’s dealings, we know that there is love in and behind them, and so we can rejoice always, even when, humanly speaking, things are going wrong. We know that the true story of our life, when known, will prove to be, as the hymn says, “mercy from first to last”—and we are content.”
We went to bed pretty early and didn’t even try to watch Sherlock Holmes… just in case they called two days in a row! I fell right asleep, completely content at not having new lungs that night.
The next day and on
I woke up Saturday at 4:00am because we’re crazy. Our 7yo had a kid’s race to be at over an hour away from home at 8:30… and I have 2 hours of treatments to do. I was happy to awake without being restrained and intubated. It was okay to go with what I have known my whole life to get ready to go out. We had a good morning getting ready to go pick up the boys from their grandparents and head to the race. I even got to drive because my wife wanted a break!
As the morning continued, I was enjoying and laughing about everything. Everything seemed more vivid and tactile. I was having a pretty good lung day, too. When it was all said and done, it was a great day for the boys, but we were stupid to go do all of that starting at 4am after the previous day. It was all good, though.
We took our time on Sunday and went only to class at 11am so we didn’t push my lungs too hard (it’s a huge church) with an extra hour and place to be and get to/from with my double tanks in tow. After lunch, we took it easy and watched Alvin and the Chipmunks and both slept a little out of exhaustion, not sleepiness.
The call didn’t come Sunday night, but it will come again soon, and when it does, God will get the glory again, because this has nothing to do with me except a couple of body parts.
Here is the TL;DR for busy people:
Too long, didn’t read
While the day was an emotional roller coaster, with the highs being WAY up there, the lows were surprisingly mild. They just weren’t the right lungs, and this protected me from years of issues, so it’s all good. The call for the perfect lungs for me will come in God’s timing. I am content to wait.