All trick, no treat!
Excuse us, but the saying "trick or treat" really hit home for us a few days ago. On October 31st kids all over America were ringing doorbells and spitting out those words automatically while eyeing strangers candy. Running up and down sidewalks counting their treasure, eagerly imagining that the next house would be the big jackpot for candy. "Trick or treat" everyone was getting a treat, even we thought we would be getting the biggest treat of all! Treat my ass...suck on that (a certain finger is in the air, jabbing at the sky in no particular direction). Halloween is my favorite holiday by miles and miles. Rima loves it also. But, she did say yesterday that she may not love it as much as she use to anymore, that's upsetting to me. Even though we had a hell of a ride the last few days I still consider it to be the be all end all of holidays.
Let's dive into what happened, have your floaties on kiddos, because we're plunging into the deep end of a very dark pool for the next few minutes. Have a sit down and maybe a shot of whiskey to wash all the upcoming information down a little more smoothly. Side note, we're so much better now (three days later) but we promised at the start of documenting this journey to bring a truthful and honest depiction of what comes with getting a transplant, the good and bad. We are now prepared for this to happen again and have learned so much to make next time less stressful.
Sunday, we had a very lazy day. Both of us had not gotten a lot of rest that night so we didn't do much the next day. I worked on the website and Rima watched Californication. We've started a ritual before bed, I tuck Rima in aka "tuckins" and we talk about our agenda for the next day. So that night I give Rima her "tuckins" and we discussed our plan for Monday. Rima pointed out the ladybug in her room that had been a hanging out for a couple days. She named him Lenny, and we both thought he would bring us luck for new lungs soon. We didn't end up going to bed till around 11:30pm Sunday night. As I tried to fall asleep that night I had a gut feeling that we would be getting the call that night. I don't know how I felt it, maybe it was just stress building up and anxiety of the unknown. I was trying to put myself in Rima's headspace that night of how she would be feeling once we get the call. I also was thinking about all the stuff I needed to do once we get it...a list of cleaning was being tallied in my head.
At around 1:20am my bedroom door was aggressively pushed open and Rima was saying something about a call and new lungs. She scared me awake and I thought there was a fire or something. She ran to my bed and jumped on it softly yelling "I got the call...new lungs....new lungs"! She was smiling and bursting with excitement. I made her recite what was said on the call to her. She was told that there was a match for her for two new lungs. We did not need to be at the hospital till 5:30/6:00am. The caller went over a few details and information with Rima like what to do when we arrive and where to go. We decided to leave the house around 5am. So we had about three and a half hours till then. We tried to go back to sleep for a couple hours but who could go to sleep after that call, hell to the no! I laid in bed for about twenty minutes until I realized my brain would not shut up. So I got up and started to clean. I mean might as well get the house in tip-top shape before that's the last thing on my mind, right?! Rima, was in the same boat as me, so for about two hours we were cleaning, packing and reorganizing.
Shortly after 5am we departed from the house. The drive to the hospital was pretty surreal. I could tell Rima was feeling every emotion in the book and so was I. We got to the hospital valeted the car and went to the 6th floor to be admitted. Once we got to her room the first few hours consisted of nurses checking her in, people asking her medical history questions. She had labs done which involved about twelve tubes of blood being stolen from her, the vampires were going to have a yummy Halloween treat! She had an EKG done, some X-rays, blood pressure and heart rate checked almost every hour.
At one point someone from the surgical team came in and it really threw us for a loop. This man walked in and started asking Rima some questions. He clearly had not looked at her chart nor did he preface that he had no clue why she was there. He asked questions like why are you here, why do you need new lungs, how long have you had CF. I was two seconds away from interrupting him with "Sir, are you fucking high right now? Is this a joke...please leave the room and read her chart and only then come back in and ask real questions." During his questions Rima and I made eye contact a couple times and I knew she was on the same level of frustration as I was. After this "character" exited the room we both harassed one of the nurses about him, she agreed with us on how strange he was. Unsubscribe.
At around 7am or so Rima got a call from the man who called us with news of the new lungs. He said that the OR was booked for around 12pm so to sit tight. We knew going into this that waiting was part of the deal but we were slightly annoyed that we would have to wait for another 5 hours. By this time in the morning we had told our close friends and some family about what was going on. We didn't want to announce anything to the rest of the world till it got closer to the real deal. This could still be a dry run, which is when the lungs turn out to not be viable and they are unable to perform the transplant. This is a common occurrence with transplants like this one especially. It's a mental game of trying to deal with your emotions in this situation. You are either about to go through a very big life changing surgery or about to be incredibly disappointed and sad. So, a smoothie of emotions is the best way to described what we were going through, Rima has coined that phrase.
12pm came and went. We got word from one of the nurses that now the OR time was pushed back to 3pm. Then 3pm came and it got pushed to "early evening", what's that even mean!? At some point her pulmonary doctor came by, Dr. Dunitz and touched base with us. He was pretty excited about what was about to possibly happen. Our transplant coordinator Megan, also stopped by and checked in on us. She was bubbling over with excitement for us also. At this point we had gotten pretty stuck with thinking this was the real deal. We had bombarded everyone with questions about dry runs and the likelihood of this being one. Legally the medical staff can't guarantee or promise anything but a number of them had told us that they had not seen a dry run happen in a while and the usually don't go this long without calling off the surgery. So, needless to say we got pretty confident and decided to alert the world.
At around 8pm we got an update that the OR time was now moved to 10:30pm. Rima and I were pooped. We had gotten crappy sleep the night before and had only been asleep for an hour and a half before we got the call. Rima had also not been allowed to eat or drink anything since she got the call since you can't before going under for major surgery. I had a couple chia bars and a few nuts, I felt really bad for eating when she could not. But she forced me to go get dinner because she needed me to be a little more sane than her at this point. We were also super sleepy but it was hard to fall asleep in this type of situation. At around 9:30pm one of the surgeons came in who would be preforming the transplant. He went over some of the risks and a play by play of what would happen right before and right after. He informed us that the donor was a high-risk donor. This means a few things; the way the person died or reasons for their death, health background, overall way the person may have lived their life which effected their organs. I don't know if I should go into exactly what he told us, but let's just say it took Rima and I by surprise and we got a little scared. Rima had the right at this point to turn them down with the information he had given us.
I asked him a series of statistical questions to get more of a black and white view of our situation and it happening again. He said he felt confident in him and his teams ability and said that they would not do the surgery if anything else came up. As in once the donor lungs were out of the body they would inspect them for any abnormalities or inflammation and make the call on if they were viable or not. So after Rima and I had a little heart to heart she legally agreed to go forward with the high-risk lungs. There was a 30%-40% chance we would be in this high-risk situation again if this one turned out to be a dry run, so we went for it.
10:30pm came and went, OR time now was pushed to about 11:30pm. At around 11pm we were moved down to the pre-op to start the ball rolling to get Rima into the OR. Our emotions started to crawl up this emotional roller coaster. T-time was getting closer and closer. Rima was exhausted, she was hungry she was thirsty and was over it. She wanted to sleep so much. Our ability to think clearly and unemotionally was nearing an end. The pre-op team started asking questions again, talking about the OR room and what would happen. The anesthesiologists came by and touched base and said that they would come by in about 45minutes and take her into the OR. Rima's OR nurse was amazing. She went over everything that was about to happen and answered all Rimas questions. She made us feel so much better and eased a little of our stress. She would be calling me about every two hours with an update through the whole surgery. It would take anywhere from eight to twelve hours.
It was about 12:30am when things started to happen. About 23 hours after we got the call. We had been at the hospital for 19 hours. They were about to wheel Rima into the OR. I had promised myself I would not cry. I had to be a rock for her no matter how hard it would be, no tears...not even one. I got a couple pictures of her right before the door out of the pre-op. I told her how much I loved her and that she would do great and that I could not wait to meet her new lungs. I hugged her so tight and kissed her head a bunch of times. As they pulled her away from me I told her to dream of puppies and that I loved her so much. The last thing I said was "puppies all the puppies" and then the pre-op doors swung shut. I was standing there alone under harsh fluorescent lighting, shaking. I did good, not one salty drop.
I then got all my stuff and headed downstairs to get my car and go home. There was no point in staying at the hospital since I needed to sleep and the waiting room is not the place for that to happen properly. Rima had insisted that I get some rest, I would be no good sleep deprived. I was five minutes away from our house when my phone ran. I looked down and the surgeons name was blinking across my screen. That's not good, why the hell is the surgeon calling me? I immediately pulled over on the highway and answered. Our fear had become a reality. He told me that Rima had been put under and was even intubated by the time the other surgeon got a good look at the donor lungs and saw some big red flags. Some of the airway passages were inflamed and might have been infected. He said it would not be smart to accept them so they would not be doing the surgery. Of course this is good that our team would not put Rima at risk with such lungs.
I asked if I should turn around and come back immediately. He said no because they would wake her up but then she would go back to sleep shortly after and for me to get some much needed rest. He said to go to the ICU in the morning and then depending on how she was doing they might have to keep her in the hospital for a couple days to monitor her. I thought to myself yeah right, no way Rima is staying in the hospital after this shit. After he hung up I kind of just stared at the shoulder of the highway illuminated by my headlights. A couple moths were fluttering by swooping slighting left and right from the wind. I was torn, I wanted to go back so bad and be there for when she wakes up. He had said there was a good chance that she would wake up thinking she got the lungs and that it was a few days later. I wanted her to see my face and not some strangers. I wanted to break the news to her. But, he was right I'd be no good after she went to sleep. So I drove the last five minutes home my gut was left on the side of the highway.
The house was super quiet. I don't like being alone at night especially in a house in the suburbs. I have an overactive imagination of people and things hiding around corners and closets waiting to get me. I would have welcomed that distraction and ability to beat the crap out of something that night. By the time I got into bed it was almost 2:30am. I set my alarm for 8:00am I would rush out of the house, pick some flowers up for Rima and be by her side when she woke up. It took a while to fall asleep, my head and heart hurt so much. What a fake out...what a trick...what the fuck! We went from our highest point to our lowest. As I tried to fall asleep all I could think about was Rima waking up and her reaction. It was not going to be good, I knew she would be devastated. We had both just got our hearts broken, she had gotten the worst of it. An empty promise and a likely possibility of a repeat situation. Halloween 2016 you're a nasty lady.