Author Archives: Jeffrey A. Carver

I’ve been waiting for a couple of months now to see if I’ll be listed as eligible for a lung transplant. I got the news this week—I’ve been approved! Yaaaay!!

Er, almost. I’ve been approved, pending (what now?)… an allergy consultation to see how allergic I really am to certain antibiotics that over the years have given me rashes or sneezing fits or whatever. Why do they care about this, of all things? It’s because a transplant means immunosuppression to prevent rejection of the new lung. And that means they need all the tools they can get to treat any infections that might come along. So, a couple more weeks, to see what the allergist says. And then, hopefully… then we can wait to see if the insurance company signs off on it. And then be listed.

So close…

I’m home from the Brigham after six days in the hospital for lung-transplant evaluation. I survived all the tests they could throw at me, ranging from neuropsych to colonoscopy to arterial catheterization… to trying to sleep in a hospital room with lights going on and off all the time, and beep! beep! beep!  As far as I can tell, I passed all the tests, with the exception of getting a decent night’s sleep. That one I failed. The only test outstanding is an esophageal swallowing test, which they had trouble scheduling. I scheduled it myself after I got home. Also, I need to meet with a surgeon. When those are done, The Committee will meet to decide my fate—i.e., whether I get listed for a lung transplant, and what ranking.

There was a contingent of docs that wanted me to stay in the hospital through it all, right up through actually getting a lung (or two). Their reasoning was that I could suddenly go downhill at any time (an exacerbation, they call it), and become acute. While acknowledging that risk, I declined to stay, on the grounds that sitting in a hospital doing nothing is a terrible way to stay healthy, and that I would be safer, healthier, and in a better mental state at home where I can exercise, do my work, and live life. And not wear out my support team before anything has even happened.

I am hopeful about getting listed and about having the operation. It’s a daunting prospect, most daunting of all (in my mind) a lifetime of immunosuppression to avoid rejection. I like my healthy immune system. But those are the breaks. I like even better the thought of breathing freely, and no more oxygen machines. I credit folks on various support groups who have enthusiastically embraced their lung-transplant experiences for turning me around on this. Thanks, guys.

I’m ready. Bring it on.

What look? It’s the only one I’ve got.

Maybe. Here I sit at Brigham Hospital, waiting for an “expedited evaluation” for a lung transplant operation. This is based upon a meeting with the medical director of the lung transplant program, who suggested that the time is right for me now, before I get any worse and while I’m strong enough to get through it in good shape. (If you’re just joining us, I have pulmonary fibrosis, a kind of scarring of the lungs, and my choices are to undergo a slow decline until it kills me, or risk a lung transplant—if I qualify.)

I checked in twenty-four hours ago for a battery of tests, but unfortunately, not much has happened yet. I am sitting here, bored, typing on my tablet. Got tired of watching TV on my tablet. I should be reviewing the new recording of Panglor on my phone, but I couldn’t concentrate.

Tomorrow. Tomorrow it’s going to start happening. That’s what they tell me. I hope they’re right.