Toffee Coffee

The Pulmonology clinic at UW has a coffee machine in the waiting area that serves a variety of flavors, and the toffee flavor is my absolute favorite. It’s like this coffee doesn’t exist until we hit the campus, and then all I can talk about is Toffee Coffee. Plus... Toffee Coffee is just fun to say. It was easily the highlight of every appointment for me. That is until we met our Transplant coordinator.

You meet so many different people throughout this whole process. Some you see one time, and some a couple times a year, but even in that frequency you’re still kind of strangers when you get together. It’s not like that with your coordinator. He was the first person we talked to and has been our constant through the whole process thus far.

Our first meeting was essentially a crash course in lung transplants. First and foremost, a transplant is a trade-off. You’re trading one set of symptoms for another in hopes that you have a longer, better quality of life. I think that’s okay. I have an appreciation for clear expectations.

We discussed survival statistics, and they’re pretty decent. The hard thing about the statistics is that most of the people in the data set are older in age, and our bodies just don’t react the same to major surgeries in our 70s like they do in our late 20s. Regardless, lung transplants are among the riskiest simply due to the fact that your lungs are always exposed to the outside world. And while we’re talking about risks, let’s dive in to some of the reality of the complications.

Our biggest complication is rejection. No matter how perfect, healthy, attractive, friendly and charismatic new lungs could be, our bodies will never naturally accept them as their own. It will always be a foreign object that must be attacked and destroyed by our immune systems. Your only ammunition is anti-rejection medications, which are immunosuppressants. These essentially knock out your immune system so it stops attacking things in your body. Luckily rejection is not super common (around 40%), and there are two types. Acute rejection can be treated with prednisone, and if caught fast enough, can be reversed, while chronic rejection unfolds much slower over weeks/months. It can be stabilized, but the lungs can sustain a lot of damage during that time that can be hard to restore.

The next risk is essentially a byproduct of the solution to the first one: Infection. I mean, obvi. You have no immune system, right? So to prevent infections you get to take antimicrobials.

Raise your hand if you know what happens next when you take, well, really any medicine? You’re right...side effects! Anti-rejection meds are hard on your body. You’re asking it to do something that’s generally very unnatural. Some include increased blood pressure, Diabetes (could be temporary and occurs in around 20% of patients), high cholesterol, Osteoporosis, and kidney issues. It puts a lot of stress on your kidneys, and some patients end up needing kidney transplants.

Essentially, gone are the days of shaking the magic 8 ball to determine if you should go to the doctor or not. You must always BOLO for signs of trouble (a fever, a change in lung function, etc.), and when they hit, you have an action plan with your coordinator, which more than likely involves a hospital visit where they aggressively look into what’s causing the issues.

At this point in the appointment, I’m fairly certain my eyes were bugged out, and my body was tense. #MyBrainRunnethOver  The next step was to do the transplant evaluation. We needed to get a baseline to be able to monitor the progression of the disease because up until now it just didn’t make sense. How could someone with such a low lung volume not need supplemental oxygen? How much sicker does he need to get before he actually needs new lungs? The evaluation would answer all the questions.