One of the weirdly comforting luxuries of CF progression/decline is that it is episodic; meaning it isn’t necessarily consistent decline, but rather stepped. Our lung function doesn’t decrease some noticeable percentage daily. With each infection “flare-up,” we just may not recover all of the lung function we lose from that instance. So for six months, my lung function may remain around 90% that entire time until in month seven, I have an exacerbation (what CF infection “flare-ups” are called) where my lung function drops down to 75%. After a course of antibiotics, I may only get back to 83% – my new baseline. This is typically how CF disease goes, but not always.
As I said above, this – at least to me – is weirdly comforting. Since it’s episodic, we can learn to live with our new baselines as they come. It’s almost as if we have time to come to grips with them, find a way to be okay, then figure it out when the next drop comes. Don’t get me wrong: living like this sucks, but we don’t have a choice, so we find ways to feel okay about it.
Alyssa was excellent at rediscovering how to live with each new baseline. Every time she fell to a new, lower, harder baseline, she didn’t sulk or wax poetic about days gone by, which is something I’ll most likely do whenever I’m not as able to play pickup basketball or run with Duncan like I can now. Post-transplant life afforded her an entirely different set of circumstances; the threat of acute or chronic rejection was one that weighed heavily on our hearts and minds, meaning figuring out how to live in this world was a challenge I’m not sure we ever fully got adjusted to.
It seems that life after a lung transplant goes two ways: there are people that are in spectacular health for many years after transplant, never struggling with rejection or any of the concerning roadblocks that are somewhat common, and then there are people that may have decent days, but the roadblocks are so prominent and often, no obviously new baseline is established. The latter was the fate Alyssa and my family were confined to.
I can confidently say that after Alyssa’s first transplant, she didn’t go a full three months without some circumstance that upended her life for a time. She had medical issues – bouts of acute rejection, seizures, bowel obstructions, pneumonia, sinus infections, and more. And she had personal issues – losing her hair was one of the most difficult things she ever went through, she was unable to work consistently or move out on her own. (An aside: watching my sister as she sobbed when she was losing her hair – one of her absolute favorite things in the world was her hair – in Houston back in 2013 will remain in my mind forever. After everything she had gone through, that felt just downright insulting and unnecessary. I’m still distraught about how difficult that was for her.) The point of all this is to say that transplant was supposed to allow my sister to begin living a full life, or that’s what we had hoped. It’s hard to convey how hard it is to live daily when you believe you’re so close to a life of freedom from health worries when those health worries are just so damn frequent. We all want to believe that transplant does afford everybody that gets one that life. This isn’t reality, unfortunately.
As burdensome as this life was, we remained hopeful. I will never act like the LaRosa family is one that never struggles, worries, or feels hopeless, but I will also say the unique blend of personalities that we four had allowed us to be strengths to complement each other’s weakness. My mom has always been a momma bear, understanding yet protective. My dad has always been one that’s compassionate but reasonable and detail-oriented. Not to get too bogged down in all of this, but I think that our complementary skills sets enabled us to feel that, as a family, we could conquer just about anything, but we needed all four of us to do so.
I’m now going to try to put into words just how fucking difficult it is to sit in a room together where doctors are telling your family that your daughter/sister is, for the first time in her life of near-constant woes, officially terminal. We are not the first family to go through this and we are absolutely not the last. It is not my intent to be dismissive of other’s struggles or own heartbreak; in fact, my goal is to amplify that heartbreak and to write a message of love and support for that pain.
The fear after an organ transplant is rejection. That’s the one word. It’s a word you carefully tiptoe around saying so as to not jinx your fortune. For people that have had any sort of transplant, they’re prescribed immunosuppressants for the rest of their lives. Our bodies have a way of recognizing what is part of us – the “host” – and what isn’t. It’s obviously a bit stressful on the body to remove the organ it recognizes and place something totally foreign there instead, so immunosuppressants are used to suppress the mechanism that would typically recognize and attack those foreign invaders.
There are a couple of problems with this strategy. First, your immune system is mostly a good thing, so turning it off has some bad effects, probably the most significant of which is the exposure to viruses and bacteria. Secondly, immunosuppressants are taken orally. Our bodies metabolize medications differently and sometimes doses have to be occasionally changed to ensure that the proper concentration is in the bloodstream. If the concentration is too high, hair loss or brain swelling can occur, as it did in July of 2016 when my sister had such a serious seizure that she stopped breathing and had to be resuscitated (another in the long list of horrible things she went through and we witnessed). If the concentration is too low, that immune response mechanism resumes and can begin recognizing the organs as foreign, or in other words, rejection.
The biggest lifestyle difference between the chronic disease that is CF and the chronic disease that is post-transplant life is that while CF may be mostly episodic decline, rejection can onset suddenly. Alyssa would be feeling healthy for a couple of days, then wake up with a cough and sore throat, indicating maybe a virus or worse, acute rejection. There are a handful of options that can rapidly reverse acute rejection and most of those are decently efficacious, but Alyssa’s body did not metabolize immunosuppressants well, so she seemed more likely to go into acute rejection. This type of lifestyle is difficult – since rejection can so rapidly come on, that concern is always present.
Acute rejection is mostly treatable; chronic is not. While their mechanisms are not completely understood, the biggest difference between the two is their prognosis. It’s possible for your body to be in acute rejection at one moment, then after a few days of treatment, no longer be in acute rejection. Chronic rejection is not that way; your biggest hope once diagnosed with chronic is stabilization. Strangely, in a weird twist, it’s sorta like CF decline. Neither can be cured, so the goals of treating both are to minimize rate of decline. Chronic is closer to end-stage CF, however, where “stabilization” is still relatively poor quality of life. With end-stage CF, hope still remains: a double lung transplant. After chronically rejection two double lung transplants, you’re no longer considered a good candidate, so the road is over: no other options.
So we sat there in that hospital room in Lexington, Kentucky, on that cold day at the end of January, where the following words hung in the air: “We’ve known that Alyssa was probably in chronic rejection for several months now, but the treatment we’re doing isn’t working. It’s clear that Alyssa is not a great candidate for a third double lung transplant, as we are unsure she’d even survive the procedure and we believe she would most likely immediately reject the new lungs. We encourage you to make the most of the time you have left. We are so sorry.”
I’m not sure what we expected before that appointment. This was Alyssa’s third time feeling this physically depleted and constantly short-of-breath. The signs were there, and we all probably knew in the back of our minds. But hearing those words from her doctors meant that there were no more reasons to be hopeful, aside from hoping she would not suffer. I hate to admit this, but that was when Alyssa first began to pass away; there were only a few moments where Alyssa would be totally caught up in the vibrance of a good moment for the rest of her life. My sister would only survive six weeks after this appointment.
For the first time in my life, Alyssa’s path broke from ours. After this day, we would have to hope for no pain and a quick end. How do you find a new baseline when the next step is death? How do you find solace in that? After decades of experience, Alyssa was as good as anybody at finding reasons to be hopeful, but hope is based in believing something positive is in your future. There are very few instances where death is a reason to be hopeful. What did Alyssa have to be hopeful for? I suppose part of me wants to believe she was finally hopeful to enter into a perfect rest, where pain and suffering no longer existed. I don’t know if she reached that point. My sister loved life and her zeal for life was sincerely paralleled by almost no one. My sister did not want to die so young, even if it meant more hospitalizations and pain. We talked a few times when she was doing okay if she’d consider a third transplant. She said she didn’t want another, but always hedged that she was thankful for the extra time she did receive so it would be considered.
With every fiber of my being, I despise 1/31/18 with the strength of a thousand suns. It was this day that stole my sister’s life. She knew she would die soon, but when was soon? Why do anything if she’s going to be gone in 6 months, or 3? My sister was forced to make an impossible choice: continue on doing all of her treatments and maybe get a bit more time or forego them and maybe still get the same amount of time. She was forced, by no fault of her own, to confront her existence and her fate before anybody should ever have to. If you know my sister and me, you know we’re very different types of thinkers. I don’t know what she was thinking in the time after this day, but I do know that she was terrified for herself and for how we would process this.
I feel powerless when thinking about what must have been going through her mind. Hell I feel powerless when I think about how I felt. We don’t think about death until we have to. It is impossible to fathom that we will one day cease to exist; it’s even more impossible to imagine that day coming in the near future. Suddenly your most menial concerns dissipate. Who gives a shit about followers or exams or someone making fun of your outfit that one time when you’ll not be here in a matter of months. Only the most important concerns matter anymore – how our loved ones will move forward, if we’ve said what we’ve wanted to say to those that we love, and if we’ve lived our lives well.
1/31/19 marks the anniversary of my life beginning to change. While March 12th is clearly the climactic date that divides my life in two, it was 1/31/18 that I had to start changing. I began preparing and rationalizing all of our futures. There were moments that I was forced to remove the emotional component of my brain when I was consoling my mother. I will never forget my mom asking me if I believed there was any chance of Alyssa’s chronic rejection reversing and her living longer. In what I still feel like was the coldest moment of my life, I had to flat-out say “No.” No hedging or anything. There was no hope that my sister would or could “beat” this. That is simply not how chronic rejection works. I began to feel anger and resentment at any mention of a “miracle.” Alyssa and I hated the discussion of miracles. We believed that was not how we should live life. The hope of a miracle removed ourselves from reality. I understand that I was not wrong in that moment when I talked to my mom, but it meant that I was already putting my sister in my past, I was already beginning to griever her. I hate that we had to go through that.
In this moment right now, the hardest part of death and grief is how it removes any sense of control from us. We could not control what would happen with Alyssa. We were forced to sit and watch, with no way to provide her with any comfort other than our love. I made promises to my sister that I hoped would allow her to feel like she had change the world in some ways and that her legacy would live on for a long time. That was the extent I knew I could maybe provide some respite.
I recognize ten and a half months is a short time, but there are moments I feel more lost than I did in the first couple days after Lyss died. I worry about the next six weeks. That anniversary mark scares me; it’s when I feel like I need to turn a corner, even though I know that isn’t how grief is supposed to work. How is it that nearly a year later I can hardly remember certain things about my sister and yet it feels like she’s not even gone? How do I accept that memories of my life with her are going to fade? How am I going to respond or make it through rough days when my lungs decline? These are thoughts and fears I can’t control and they are continuous reminders of my life without my sister.
I wanted to remove myself from my sadness today so I took Duncan to a park. I felt connected to nature and realized that I can feel whole in moments, even though Lyss is gone. As I turned the corner towards a trail, I caught a glimpse of a red cardinal – what we have found to be Alyssa’s way of letting us know she’s still with us.