December 19, 2014

Muddling through

Post-transplant, day 374. Our troubles will be out of sight.

A year ago tonight, I walked out of Duke hospital, stitched and stapled, hacked and hurting, but transplanted, alive, and walking. Oh, my donor, thank you.

Two evenings ago, I was again discharged from Duke, after a week in the hospital. I won't go into the whys and wherefores, but it boils down to this: if there is sedation and biopsies, then there will continue to be spells in the hospital immediately after my bronchs. It appears to be a fact of life.
While in the area and in hospital, I had time to see friends, both in and out. I was glad to catch up with Jason, who has become so strong in rehab that they’ve taken him off the transplant list indefinitely. He’s even off oxygen most of the time. But most of the friends I caught up with were in the hospital; not outside, not healthy.

I am beginning to get a little too familiar with 7800. Down the hall, in one of the six ventilator-support rooms of the ward, I found my oldest online CF friend, Lori Moriss, who was already talking about leaving, as she's on the tail-end of an exacerbation. She’s on ventilator support permanently and is not eligible for transplant. But she has spurred me onward and it was wonderful to talk with her through her doorway. There was also Christy Hubbard Hamilton, much to my surprise. She, too, was wrapping up a hospital stay for infection and left before I was discharged. Good catching up with her.
What most surprised me was finding Miranda Fae still in 7800. She is a re-transplant and has been recovering for five months so far. I had figured she’d be long gone by now. She had such energy and worked so hard in rehab before transplant. But this transplant, she says, has been as hard as her first one was easy. Night and day.

Of course, I visited Heather James several times over the last couple of weeks, trying to buoy her spirits. Her recovery continues, though slowly. She is basically tied to her hospital bed with tubes and wires, except when walking laps. I hope she’ll be moved to stepdown soon. One day I stepped out of my room to walk laps and was completely surprised to find Heather had come to visit me! In a wheelchair, surrounded by equipment, nurses, and her family -- I can appreciate the effort it took just to get off her ward, much less come over to Main to see me. It was the best visit of my admissison.

The rooms of 7800 haunt me somewhat, knowing who stayed where and for what reason. Just two rooms down was the room where I last saw Ellie alive. As I walked laps, I kept passing her room, expecting to see her in there. But no…just some other random lung patient whom I never saw out of his room. I was most pleased, though, to find out that the front desk has received a matted and framed picture of Ellie that her father sent and will soon put it up on the wall. In a way, I'll always know where Ellie is.

I think I needed this return to Duke to assure myself that there is a foundation that does not move, though the people we love float in and out of our lives. In the last few days, there have been a lot of deaths in the nation-wide CF community, including some acquaintances of mine. A couple were post-transplant, getting hit by rejection or cancer. It is a sobering reminder that we’re all in a continuing fight, that CF has no mercy, and does not take a break for the holidays. Being a CF patient, especially a transplanted one, means that our very best friends are spread far and wide and we see them seldom; yet when we do, we make the most of our brief time together and we never forget to say "I love you", for the next day one of us could be gone, our lives as easily blown out as a candle.
Tonight, I am reminded that someday we all will be together -- friends here and gone -- if the fates allow. But until then, we'll have to muddle through. Somehow...

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