In my last post, I talked about how I was feeling overwhelmed due to stress at work in conjunction with my mom needing to undergo a lung transplantation.
Well, since that post in mid-September, I finished up a lot of work travel and my mom completed all her tests to become a transplant candidate.
In fact, on Thursday at 4:20, she was officially added to the national registry as someone needing a couple of lungs when they come available.
The organ transplant list doesn’t work the way it used to. It used to be first-come-first-served. Nowadays, they take into account your health, disease, and all of that and put it into a computer and assign a score to you based upon your need for new organs. But as was true with the previous system, it doesn’t matter where you are on the list if the organs aren’t a match.
Well, my mom has a very common blood type. A+ because she’s the best mom.
The matching goes well beyond blood type, though. I don’t know a lot about it, but you also have to make sure that your antibody profile (This is the cellular record in your immune system of what diseases your body is ready to fight off.) isn’t wildly out of synch with that of the donor organs.
Also good news: my mom’s profile is pretty easy to match owing to her not spending any time at all in exotic places nor licking doorknobs.
The hospital told us when they added her to the list that we should pack a “go bag” and set up a telephone tree. I’m still not really sure how one goes about those things. We certainly have not done either of those things.
We had talked about how long we thought she would have to wait. The hospital told us to expect to wait a few months. Most people seemed to think it would be three to six months. I thought it would be less than three months, but I did expect to have to wait more than a day.
It was my parents’ wedding anniversary on Thursday and last night we went to see Frankenweenie. When we were asked to silence our cell phones, my mom said, “But how will we know if the hospital calls?” I pulled my phone out and set it on my knee for the duration. If they called, it would light up.
Waiting for new organs is kind of weird. There’s the happy anticipation like Christmas, but you do have to acknowledge that you’re really just waiting for some other person to die. And when they hospital calls, you just know you’re going to freak out and run right over to the hospital even though they give you an hour to get there. The freak out is why you’re supposed to have a bag and a phone tree. This conflicted waiting and sense of happy foreboding is why I joked yesterday that it was like the “lungs of Damocles” here. You just never know if or when the lungs would show up.
The when was after the movie last night. We had just gotten back and had been yucking it up about how they hadn’t called yet. The joke, of course, is that it was silly to think they would call so soon. That almost never happens.
I had packed my weekend bag and was getting ready to head out with the BF. I was showing my parents how to watch a movie on my PS3 when my mom’s cell phone rang with an unknown number.
From there, the course of events was rather bonkers.
I’m a pretty good person to have around in times like this unless, of course, you’re expecting some sort of emotional sensitivity. My stress mode is to get things done, to immediately focus on tasks and organize them and get them out of the way. I have to say, I think I did pretty well at not saying anything outrageously insensitive to my mom who was not very focused on packing a bag for the hospital, but rather spent time calling people and telling them the story I just told you above.
My dad also started calling people, which was completely appropriate for him to do since he didn’t have any other tasks to complete at that time. In theory, he would have kicked off (chopped down?) our telephone tree.
The BF was there and he kind of stood out of the way and made reassuring sounds and faces. Exactly what I needed.
And off to the hospital we went!
The tragic part of this story is that my mom’s new lungs are coming from a 15 year old boy. I haven’t heard the circumstances of his death, but as I told the BF last night, I don’t really want to know. A small part of me already mourns for his death and his family’s loss. I don’t want that part to get any bigger by knowing any details about his life. I just hope his family derives some comfort from knowing that his organs are going to save lives elsewhere. A small, dim comfort, I’m sure.
My sister hopped into the car immediately and started calling people to watch her dog and pick up her shifts at work.
I sent several texts to my mom’s bestie because I was warned that she would hunt me down if I did not keep her apprised. I sent some emails to alert work people.
Last night was all about getting new blood work done and running the pre-op tests and all that stuff. They had to get blood, of course, to make sure that the new lungs would be compatible. They also had to make sure that her other stats (clotting and whatnot) were good.
I went home a little after midnight last night and got a few hours of sleep. I wanted to be back at the hospital before she left for surgery, which meant that I needed to be back here between 5 and 5:30. Of course, after I got here they told us her procedure was pushed back a couple of hours.
And so that’s where I am right now.
I’m sitting in my mom’s hospital room with her and my dad and we’re just waiting. I’ll try to remember to give updates later on.