They wept for her body and rejoiced for her soul.

Found peace in liberation and sorrow in loss.

Found solace in tradition, in hope, in remembrance.

And after awhile, they left her side. Her eyes no longer able to see their tears, but her love they carried with them, along with her memory and her joy.

I'm starting to sound like a broken record.

CF this, lung transplant that.

But, despite my best efforts, CF is becoming more prevalent in my life, and that's an adjustment I'm slowly learning how to cope with.

And I find writing to be cathartic, a method of sorting out my thoughts into a legible, comprehensible order. They rattle less in my brain, and there's more room to remember the fun stuff, like how to lip-sync to bad 80's songs (and by bad, I mean SO GOOD), and how to play Jenga.

For awhile there I felt like I lost a bit of who I was. A vital bit, personality wise. I lost my sense of humor, and life isn't a great time when there's nothing to smile about. I've been working on that. I even cracked a few (awful) jokes lately. I smile more. I feel better about myself, and about these ol' lungs of mine.

So, quasi sense of humor in tact, I had a meeting with the new pulmonologist on the team, and she introduced me to the nitty gritty of transplant life. It was fascinating, scary, daunting, and informative. I like information. I like to pretend that I have some iota of control over my life, and one way of doing that is processing and understanding what may occur in the future.

Like, you know, a humongous surgery of monstrous proportion.

No biggie.

So in having her explain the process in such depth, I felt a weight lift. A dead weight that I didn't realize I was carrying, a weight that stems from not understanding, and being afraid. From lacking the confidence to believe that I could survive something so huge.

Well, now I understand a bit more, and it's still damn scary, but it feels like something I could do. Something I could take on and handle, just like I've handled CF for many, many years.

In no way perfectly, but as a work in progress.

SO: to summarize what the Dr and I talked about, these are the highlights of pre-surgery, surgery, and post-surgery events that I may or may not one day face. I'm simply putting it here to chronicle it for my own sake, as a way to organize, at least in writing, something so huge.

1. In the past, when a patient’s lung function dropped below 30%, that was an indicator of needing to be evaluated, if not listed for organ transplantation.

2. Today, that’s less of a factor than other clinical signs, such as carbon dioxide retention and constant use of oxygen, generally in the 4-6 liter range. That’s a LOT of supplemental O2.

3. I’m fortunate to say that my body exhibits neither of those. That lifts a slight weight off my shoulders.

4. Once the evaluation tests are done (psychological, physical, in depth look at all organ systems, etc, etc) and if I deem fit to be listed, I would be given an allocation number and placed on the organ list accordingly. The old system was first come, first serve, and the new way of doing things allows patients with greater need for organs to get transplanted first.

5. As a rule, cystic fibrosis patients are young when listed, and given a fairly high allocation number compared to the elderly, say, COPD patients with a history of smoking.

6. Mass General is very specific about the lungs they choose. Apparently lungs are a tricky organ to find is top shape. Often they’re damaged in whatever accident deemed them available, or they’ve been ruined by smoking or infection.

7. Once a set of lungs is available that matches my blood type, body size, and sometimes even age is a factor, they’ll call me in and I’ll be prepped for surgery. They make incisions below the breasts on both sides, and the operation lasts for 6-7 hours, provided all goes smoothly.

8. I would be placed on a ventilator post surgery, while sedated, as the new lungs would need time to adjust to breathing on their own. There would be four chest tubes placed; two in each upper lobe, and two in each lower, to drain fluid, air, blood, etc. Those would be kept in place for two-ish weeks.

9. Once off the ventilator, and off the sedatives, though very much so still on pain medicines, anywhere from 1-7 days post surgery, I would be moved from the ICU to a general medicine floor, where I would stay for a rather extended amount of time to recover.

10. I guess it’s standard to have a hospital stay within the first six months, and the recovery for the incisions would be rather extensive - 3-6 months. Until that point, I wouldn’t be physically able to drive, exercise, do any physical activity that could strain my chest.

11. There would be a bronchoscopy at 1 month post-op, and 3 months, 6 months, 12 months, etc. That’s the doctor’s way of determining whether an infection exists, or whether our bodies are rejecting the new lungs.

12. Unfortunately I’d be on a rigid regimen of immunosuppressants to keep my body from rejecting the foreign lungs. Those can affect kidneys, blood pressure, GI tract, etc. Though, from a medical standpoint, that’s all treatable, whereas chronic rejection can be untreatable.

As I said, daunting.

I wake up some days in a state of blissful morning forgetfulness, and I feel healthy and free and then I remember, and I wonder how I'll keep dealing with this as it continues to progress.

But, in the fine words of a Miss Dory the Fish - just keep swimming.