Why don’t you get a lung transplant?

“Why don’t you get a lung transplant?”

I have heard that question countless times over the decades, and more frequently as my health has declined in recent years. Each time I secretly gritted my teeth and reminded myself that most people are nowhere near as familiar with pulmonary disease as I am before trying to answer calmly. So I figured I should give a public answer to the question on so many people’s minds: Why doesn’t she get a lung transplant?

Short answer: Because it could kill me.

Long answer: All transplants are complicated, and lung transplants particularly so. CF patients always require double lung transplants, because both our lungs are so heavily impacted and full of infection that a single lung or partial lobe transplant is basically worthless. Statistically, close to 90% of lung transplant recipients survive the first year post-transplant, but that number drops to about 50-60% for surviving 5 years post-transplant. They aren’t going to consider a transplant until you’re already running out of time, because there’s a significant chance that the transplant itself could end up shortening your life.

Then you have to be lucky enough to actually get a transplant. You can’t exactly walk into Lungs-R-Us and grab a pair, and people tend to need their lungs while they’re still alive, which means we’re dependent on lungs from deceased donors. And that donor needs to match on several different criteria, the lungs need to be healthy and undamaged, and the donor needs to be within a certain geographic area as organs can only travel so far. Being listed doesn’t guarantee if or when you will receive lungs, and some people unfortunately die while waiting.

Once you get a transplant, the complications begin. The surgery itself is long, grueling, and dangerous, and is followed by a lengthy and complex recovery period. If all that goes well, then it’s time to adjust to your new life as a transplant recipient. That includes a lifetime of immunosuppressive drugs to prevent your immune system from rejecting the foreign organ in your body, which means massive lifestyle changes to avoid the infections that your weakened immune system can no longer fight off. This is particularly tricky with the lungs, the only transplant organ that is constantly exposed to the outside environment and all its contaminants with every breath you take. And even with all your best efforts, you will still likely experience and need to be treated for some form of rejection. There is an endless array of potential post-transplant complications, many of which can be fatal.

Is it worth it? If it goes well, yes. It’s basically trading one chronic illness for another, but at least in this one there’s a chance you might be able to breathe and possibly even function as a mostly-normal person. But it’s definitely not worth trying while you still have a fair amount of life and normal(ish)-person-ness left in you.

All that being said…

On Monday, my doctors shocked me by saying they wanted to start the process of getting me on the transplant list. I thought my lung function needed to be lower and that I had more time, but the fact that I’ve been having such frequent, severe, lengthy CF exacerbations that have been so minimally responsive to treatment makes me eligible. They’re also very concerned about the fact that we’re almost out of antibiotics that are at all effective against my pseudomonas infection. I’m running out of time more quickly than expected, and they want to pursue this option while I’m still healthy enough to have a greater chance of coming through it successfully.

This week has been a crazy whirlwind of testing and consults. Today the transplant team met and determined that, as long as the last few tests go well, I am a candidate for lung transplant. They have not yet decided whether or not to list me immediately, as they want to see how I respond to one last antibiotic. If it goes well, we may hold off a few more months. If, as I expect, it doesn’t have a significant impact, then they will likely list me immediately. And apparently HUP is a high volume transplant center, so the expected wait time once listed is only 3-4 months. Basically, by this time next year, it’s expected that I will be post-transplant.

It’s been a wild ride of a week. I’ve definitely been stunned and terrified, but at the same time I’m also relieved. The last 5 months have been pretty terrible, and the thought of slogging through a few more years like this was kind of horrifying. I was beginning to lose my will to fight, as I’ve been working so hard yet seeing almost no return. Things were starting to feel kind of hopeless and pointless, as I was spending so much time just surviving and very little time actually living. I honestly wasn’t sure how much longer I could keep going on like this. So as much as transplant is terrifying, it has also revitalized my will to fight, because at least now I have a goal and a chance of things being better. I can do grueling, I can keep hanging on by my fingernails, as long as I know that this fight won’t be forever and might actually accomplish something.

I’m very tired. And I’m definitely not looking forward to the trials coming my way. But I’m also not done quite yet. Bring it, CF! You still haven’t gotten the best of me!