F U April Fools'
It's hard to not think that the universe has a sick sense of humor. In my eyes currently today, the universe is a prankster with impeccable timing. My last post on Friday was about waiting, how fitting that it would be the post right before we got some great news, or so we thought! Saturday was a beautiful day in the Twin Cities. Rima and I decided to start off April on the right foot with a picnic outside by the Mississippi River. Saturday morning I packed our bags and made some picnic snacks. A healthy farro salad with some spring rolls and of course cheese, crackers and olives. The olives were for me since Rima's not too keen on them and I could eat olives at any time during the day or night.
We embarked on our picnic expedition in the early afternoon. We first drove by Minnehaha Falls, to see if it would be possible to picnic there. Nope, it was swarming with people. Hibernation season was over and all the humans were out in droves. So instead we drove down along the river southwest and ended up on the banks of Saint Paul. Actually right where the ferryboats are that we took on my birthday back in October. We found a sunny spot on some grass, void of any humans coming out of hibernation. I set up the blanket and laid out the picnic spread of snacks and treats. We were taking in the sunshine and vitamin D. The view was beautiful, blue skies, city skyline to the right and the banks of the river to the left.
In the middle of popping olives in my mouth Rima's phone rang. I saw a 612 area code through the sunshine reflecting off her screen. My heart immediately began to skip beats and flutter. It's a Saturday, no way this is a normal medical call from the hospital. She picked it up and within the first few seconds she began to answer some questions, "no, no, yes, no, no." From her reaction and her responses to the muffled questions I guessed it was either THE call or someone from Colorado calling. Don't ask me why I thought Colorado, I just did. Then about 45 seconds into the call a huge smile crossed her face and she put the phone on speaker. "Is this an April fools' joke?" she asked. A mans voice vibrated from her speaker chuckling, "no I would not joke about this."
We were getting the call for new lungs! For the next few minutes Rima asked some questions and the transplant coordinator on the other side of the phone answered them and told us about the situation. The donor was a DCD donor; donation after cardiac death, meaning the donor suffered massive brain and head injuries and was on life support. The donor would be taken off life support around nine that night and if they stopped breathing on their own within 90 minutes, then the surgeons would be able to harvest the viable organs. The coordinator said the lungs looked great from all the tests that were run and if the donor passed within the 90 minutes, there would be a very good chance that Rima would have new lungs! We were ecstatic! Don't get us wrong we're not monsters we also felt immense sadness for the donor and their family but can you blame us for also being happy?
Going through a transplant you have to learn how to compartmentalize your emotions, especially when it comes to thinking about where the organs are coming from and how. The roller coaster of emotions had left the station. We were feeling all the feels. He told us he would call back soon to let us know when we needed to be at the hospital. This was about 3pm central time. We expressed our excitement and gratitude and then got off the phone. For the next minute or so we both just sat smiling at each other and intermittently broke out into "getting new lungs, getting new lungs!"
I packed up the picnic after a few minutes and we headed back to the car. We figured we would only have an hour or two at home before we would need to be at the hospital. On the way home we got a call back from the coordinator and he said that we would have to be at the hospital between 4:30pm and 5pm. It was 3:30pm at this point so by the time we got home and had to leave we were only left with about 40 minutes to hustle. So we did just that when we rushed through the front door. My heart was racing as I was gathering our belongings. We knew what we needed and what we didn't after the first dry run back in October. I felt much more prepared and aware.
On the ride to the hospital the feelings of anticipation and trepidation were flowing through my whole body. We spent a lot of it in silence trying to pan through all these emotions. I dropped Rima off at the hospital right after 5pm and then parked the car. By the time I parked and got to her floor she was already in a room and nurses were working around her, checking her in and pulling out things to stick on her. Here we go, rush rush, slow slow, rush rush game was about to start. For the next hour or so it was a flurry of bodies in and out. Demands on things for Rima to do or questions to answer.
Her room was a sauna! It was so hot on the sixth floor, which was strange because from my experience back when Rima was in the hospital for three months, the sixth floor was always cold. Not cool bro, not cool at all. We were already super hot from the excitement and then the added factor of stagnant hospital air, with the sauna hell fire effect really was pushing us over the edge. We both were very vocal about how hot it was, the whole staff was on our side. Were they trying to cook us for dinner?!? It took a while for the room to slightly cool, thankfully one of the nurses brought in a mini fan to assist in the body cooling.
It was strange to go through the pre-transplant dance again. Blood work, EKG, chest X-ray, first shower, medical questions, etc. Time was going by quicker in a way. Maybe it was because we knew what to expect or that we were very aware of how close or far we were from 9pm. For about two hours we were basically left undisturbed. We even got to watch some Weeds. Around 10:40pm our nurse told us that she was told that Rima would be making her way down to the OR to prep for the surgery between 11:30pm and 12am. So of course in our heads it was on. Then around 11pm Rima was about to jump into her second mandatory scrub down shower when her nurse came in and had a look on her face I didn't like. I knew before she even started to speak that it was a no go.
The nurse was upset, her voice kept shaking. The donor did not pass in time and the surgery was off. Dry run numero dos, was added to our book. Rima was in the bathroom with the door open when the nurse came in and told us. It was a strange way to look at it. Even though, we're in this together, we're separate; in what we gain from this life changing surgery and how we handle it. The physical separation mirrored the emotional one. I was so sad for Rima, no, I was heartbroken for her. She was let down yet again, for the second time in a row. I can only grasp at attempting to imagine what she was feeling. For the next five minutes or so we lay in silence on the bed. I was holding and hugging her.
Anyone who has gone through a dry run or anything similar to it knows that you go from your most excited; filled with the promise of a new life, one that has been in the works for years. Pain, sweat and tears all about to pay off. To suddenly the crushing feeling of loss and emptiness. The sudden and absolute heartbreak. Highest high to lowest low within seconds. Your brain tries to make sense of what's happening at the same time that your heart is trying to rip out of your chest. But then add to it knowing that there are other people out there who might have also gotten a call for a new organ, a new chance at life and now are being told it won't happen. The loss of the donor and the heartache of their family. I can't imagine the heartbreak of having to look at a heart monitor and watching the spikes flatline. Minutes must seem like hours to them. An emotional roller coaster that is derailed and is in shambles beneath the rusty tracks.
One of the surgeons from the team came in a little after to explain in more detail or as much as they were legally allowed to share. Basically the donor did not pass within the time that the organs are still considered viable. There are strict laws in place to protect the donor from any ethically questionable methods to speeding up their death in regards to breathing. I have a lot of research ahead of me; from what I've gathered and learned so far, these laws seem a little out-of-date. If a donor is already brain-dead and life support is pulled and even though they might be breathing on their own for a certain amount of time, they will inevitably stop and pass. If the donor and/or family want to be able to donate viable organs, I believe these laws need to be changed. So logically why would something not be done to allow the organs to be harvested to save five to eight people if possible? This is a loaded question and an ethically charged one I know. Lots of red tape around this issue, but to us in this moment, the red tape was standing in Rima's way.
For the past couple weeks I've been telling the universe that if Rima does not get her new lungs by April 1st that I would stop recycling. Yes, that's right you read that correctly. Unless Rima gets the ultimate recycle, I will not recycle. You're allowed to shake your head at this point, but you're also not in my shoes. Don't be so quick to judge, you may be doing much worse if you were me. Overall I've been a model caretaker but every human has their limits. I made a deal with the universe and until Rima gets her new lungs, I'm no longer doing my part to save the planet. Again, yes I know this is not rational behavior and probably won't do anything to help speed up the new lung process but this is my Hail Mary pass. Let me have this little slice of rebellion.
Rima was not a happy camper about my threat to the universe, every time I brought it up she would shriek "No!" So, when we got the call on April 1st, we both thought my threat had worked. Man that was fast and perfect timing! The universe really does want me to save the planet....nope! Fine, two can play this game. Trust me, I'm big on recycling and saving the planet so following through with my promise won't be easy, but you know what, I don't care at this point. This is how I'm sticking it to the "man". I sound like a crazy person...I promise you I'm very rational, other than this tiny slip. Forgive me sea turtles!
After the surgeon left the room, I packed up all our stuff so we could bust a move and go home. The nurse came back in and said we were free to leave, so we did almost immediately. As I drove us back home, I had slight deja vu of my drive home during our first dry run back at the end of October. I was alone then and fighting an internal battle of emotions at 2am on the side of the highway. This time it was around 12am and I was sitting next to a heartbroken super human. What do you say, what can you say? Nothing I could or would say would make this any better. Instead, silence and self-reflection followed us home that night. I was running through ways to be more prepared for the next call. How was I going to spoil her for the next few days, what could I do to take her mind of this uninvited speed bump?!
Once we arrived back home I unpacked and Rima did some nebs. We then had a midnight snack aka dinner to us. As we ate I looked over at my sister who vibrates with strength, optimism, happiness, love and energy. I thought of all the other CF fighters who have gone through dry runs or will. I thought of all the family members and caretakers who are there to help put the pieces back together. I thought of the donor's family and friends, their ultimate loss. Damn, was the word that kept swirling around my head...just damn.
What doesn't kill you makes you stronger, really resonated with me that night. We had waited five months since our first dry run for a call. Five months for another dry run, for the false promise of a new and different life for Rima. One that she'll have to continue to wait for. One that at least for now seems like an unreachable goal since our last two calls fell on the most trickster of days during the year. Is ironic the word to use here, on the two days that people fool others, we had the ultimate pranks pulled on us. I'm not sure if I should laugh at the notion of the universe being this "funny" or throw things. Either way, a third call will come eventually and when it does, I'm going into it as if it will be a dry run. Until she's in the OR and I get the call from the surgical nurse that it's a 100% go, my hopes and excitement will be carefully bottled away. Oh, and F recycling till that happens.
On a happier note, Sunday was a lot easier than the day after our first dry run. We were a little sad in the morning but then got on with the day. Rima was set on going to the gym. I was very impressed with this choice since she had not been feeling too hot since waking up. She was given anti-rejection drugs the night before, so her body was dealing with the after effects of them. She pushed through the crummy feelings and got herself together and ready for the gym. I was totally okay and willing to have a lazy day but she was on a mission to resume life as usual, so we did just that. She even did some reps at the bench press machine. I swear this girl is wonder woman, I keep tellin' ya!