Hey gang! As you all know I have been trying to write our transplant story for awhile….. my last official story post was in April about the drive. For awhile I have beaten myself up about not getting it written down, but here is the deal – it is emotional and I really needed to be in the right place to write it. If you caught last week’s post…. I am finally ready and so we pick up were we left off…. we had made it to Hopkins.
The drive had been a sort of an out of body experience. We took a route we were not as familiar with and the reality that we had no idea what await our arrival at Hopkins hung around us like a weird fog. In so many ways the drive was strange, yet comforting. We knew exactly what we were to be doing in those moments: driving. It was the wondering what it would be like when we arrived that was really unnerving. And yet – arriving there was oddly calm.
Danny was scheduled for a regular visit that Wednesday. So we had PFTs, potential blood work, and an appointment. Well not just any appointment – we thought this one might be a little different because it was our first appoint with Danny listed (ha ha!). All of these sorts of visits happen in a building that is connected to the hospital, but on a completely different side with its own parking area, outdoor space – basically they share a campus, but feel very separate. So maybe it was because we were in more of the appointment/administrative side or that we actually had things to accomplish outside of the transplant – but we sorta fell into stride.
Running late as usual – I dropped Danny off at the door to run and get his tests started while I raced to find parking. With each action I took while alone I kept thinking “this is where I will have parked for transplant”, “this is what I brought for transplant”, “this could be our date for transplant”. But making my way into the hospital my mind started to shift. All of the familiar sights, sounds, and smells of our regular Hopkins appointments hit me and suddenly it wasn’t really transplant day – it was just a Hopkins day.
Danny came racing down with his PFTs complete as I walked my way back towards the elevators and we had this moment. Danny had been worried about being late for his PFTs or mess something up on the administrative side (can potential lungs be taken away if you are late for your blood work for an unrelated appointment??) and I had been so focused on not missing out on any item of importance while looking for parking – we practically crashed back into each other sorta catching our breath and realizing we had made it and all the actual to dos we had were done – suddenly the crazy of the day just sorta slipped away.
Here we are just like any other Hopkins day killing time between appointments. So we sorta did us. We snagged a couch in a waiting area we have often sat in while visiting the docs here. I grabbed a latte at the little cafe while Danny rested, scrolling through his phone and just like that were were back to normal. While in line for coffee my mind really tried to wrap itself around the here and now. Is this really happening? Who should I call? If I do call and sound a little crazy and the whole things gets called off anyway was that a good idea? Should I just notify the “necessary” people – Quinlan’s babysitters (another story – sorry Randi and Trevor), family, close friends with roles? Do I call the people in my life that are the guarders of my heart or the ones that keep me calm? Should I call Danny’s friends who he certainly would want them to know but isn’t feeling up to making the call? As these questions whiz around my brain and I do make a few quick calls and send out some texts – but I continue to model true to form Jackie behavior: provide the known details but make one thousand excuses so no one feels awkward or reacts negatively if the whole things gets called off. In fact, I think it was the reaction of some of our friends (“wait, what?…. Seriously?” was the general consensus) that made me wonder…. am I playing this down too much?
It was in those brief conversations of playing it down that things started to shift for me. This isn’t transplant…. no way would we be THIS disorganized. Surely this is the dry run so we get a sense of how it feels and then I can ask Danny all these questions about who we tell what for when it really happens. Yes, yes of course this isn’t real! For real transplant my hair would not be a hot mess from walking the dog in the rain, and I would surely have the proper bag packed (mental note to start a list of what that bag needs to look like), and we would have a very clear transplant invite list. Cause now I have called on all our parents to meet us and it will be for not. Today is most certainly not our day. Yes folks, I was already preparing for my transplant retake test so I could rock it .
Because here is the the truth – this day was going nothing like we had ever imagined. And not just in the controlling perfect way…. in the way that we had too long of pauses on our drive up LINK and certainly the versions of ourselves in the future would make the most of that car ride. And no, I would not be applying make-up in the middle of the Hopkins lobby for our true transplant day because I would have the ability to take a deep breath and get ready to leave the house peacefully and with make up on when the call came. For the real day, we would be so ready. In fact I was starting to get a little embarrassed about having our parents come and I worried Danny would be annoyed to have 4 others have to accompany him for the rest of his appointments, just because I was afraid of being alone when they wheeled him away for an operation. An operation he was most certainly not having right now.
So I finished my make up and stowed the monogrammed tote back away in my bag. I grabbed my Jesus Calling for my daily prayer and opened to November 30, 2016. With each moment the possibility of transplant seemed further and further away, but even still we prayed together – just in case – and waited. The time really started to tick by and with each moment I thought more and more how this wasn’t transplant day and that day I would most certainly “do right”. Thank goodness we have today for practice, I thought and maybe we can all just have a good lunch in Baltimore with our parents. In fact I had even started to come up with my excuses as to why I may have called them all a little too prematurely to get to Baltimore ASAP! Danny won’t be too frustrated right? I mean we had never talked about this…. I have never been to a transplant …. how would any of us know!! Yea – he will understand (or at least be softened by a nice lunch) and we will just do it better next time.
With that Danny’s phone rang and we all held our breath. Only hearing one side of the conversation I wasn’t sure what exactly was happening…. “I am down in the lobby”…. “the told me to just wait”…. “No I haven’t….” …. “WAIT – so today I am transplanting? Its my turn?”….. Before I could wait for him to finish and fill me in….before I could even sit and digest the words…. my phone was out and I hit “Mom” … she answered and the emotions hit harder than they would for the rest of the day…. “Mom – its us…. their ours…the LUNGS are ours”….. And with that my mind went into that sorta echo fog thing and I just stared. Tears streaming for sure and at this point I wasn’t sure if they were tears of gratitude or relief or fear… my legs felt like jello and I had no idea what to think. Mom calmed me with “this is good Jackie, this means its right”.
I guess we finished the conversation… I am not sure. Danny was barking orders and rushing to grab our stuff and head to the parking deck. I followed suit, no idea what we were doing. Trying to quickly call my in-laws and fill them in – I thought I had expressed it all clear, but Danny was telling me to “HANG UP – they want me there immediately….apparently they thought my coordinator had told me…that was the OR and they don’t know where I am” …. and with that we raced out the door to the parking deck.
To this day I have no idea what we looked like to the rest of the Hopkins world. In my mind we looked something like the family from Home Alone racing to the gate in an attempt to beat the closing plane door….. but looking back I don’t remember any stares or any faces at all. Were we yelling…. did we seem calm…. Do you ever notice how unless you are in the ER its rare to see panic at the hospital unless its yours. Did we show our panic? Why the hell did I grab for the phone instead of Danny’s hand? What were those tears…. I wish I was thoughtful enough to say for the family of our donor or for my husband who was hours away from a potentially life altering surgery…. but I really didn’t know… still don’t . Cause here is the thing about transplant – there aren’t gonna be practice days or redos. The emotions are unpredictable, the ability to react in the way you want or how you pictured doesn’t exist. Knowing what I know now – I would choose differently, even the little things… but that is a waste of time. In fact, I sorta take it back because all of what we experienced – the messy (MESSY) and the mistakes and the grit and the good – all brought us to the other side. All made us stronger and better prepared for the life we would continue to lead. And if we are all being really honest with ourselves – we did the best that we could in each moment and I am not sure you can ask for more.
Next up – surgery prep….
Thank you so much for reading and remember to make it a great day!