If you follow me on Twitter or Facebook, you probably already know that Mrs. T was rushed by ambulance last Thursday morning from our country place in Connecticut to the University of Connecticut Health Center. Once again, her blood oxygen level crashed without warning, but I was spending a couple of nights at the Hudson Valley Shakespeare Festival, which is three hours away from us, instead of sticking close to home in my capacity as her caregiver-in-chief. Fortunately, our quick-witted houseguest (bless you, Marie!) took matters into her own hands and called 911, and UConn’s ICU team had the situation well in hand by the time I got to the hospital.
It took rather longer for the doctors there to decide what had caused the crisis in the first place. At first they thought Mrs. T might have pneumonia or—much, much worse—a pulmonary embolism. It turned out, though, that what she needed was a higher dose of Remodulin, the vasodilator that is delivered to her heart and lungs around the clock via a central line in her chest, thus keeping her alive and (passably) well. No sooner was the dosage of this wonder drug increased than her oxygen levels started inching back upward.
Her recovery, alas, was well and truly unpleasant. Remodulin is a powerful drug with chemotherapy-like side effects, including nausea, anorexia, and severe joint pain, and she spent a whole day feeling miserable while her body adjusted to the higher dosage. She’s better now, though, and is resting as comfortably as you can in an intensive-care unit, such places having been known to sound like a cross between a modern-day casino and an old-fashioned madhouse.What next? The plan (laugh, God!) is for Mrs. T to be transferred to New York-Presbyterian Hospital, her transplant center, later today or early tomorrow. You will doubtless recall that we went through the same thing for the same reasons three weeks ago, partly as a sensible precaution and partly in the hope of shortening the odds that she’ll receive a new pair of lungs before she becomes too sick to be transplanted successfully:
She was moved there in preparation for the double lung transplant that she must undergo in order to cure her pulmonary hypertension. Her doctors agree that the time for transplant is ripe. While she’s stable for now, the attack of sepsis from which she’s recovering has left her extremely fragile, and the right ventricle of her heart, which was already weakened by years of chronic illness, could decompensate suddenly and without warning. This is why she was moved to New York: if her right ventricle starts to fail, she’ll need new lungs immediately.
The clock, in short, is running.
Would that there were enough donor lungs to go around! But there aren’t, which is the reason for the organ allocation list, which divvys up donor organs in the United States according to a complex formula that weighs the comparative needs of their potential recipients. For the past month or so, Mrs. T’s allocation “score” has been hovering above 50 (out of 100). This means she’s sick enough to start receiving organ offers as soon as a suitable pair of lungs becomes available—so long as it isn’t equally suitable to someone who outscores her.
Anyway, that’s the situation as of this hour. By the time most of you read these words, I’ll be on my way to upper Manhattan via one-way rental car, there to await Mrs. T’s arrival via ambulance or helicopter (they hadn’t decided which when I wrote this posting). After she gets there, a fresh set of ICU doctors will resume the task of weaning her off high-flow hospital-only oxygen so that she can be discharged and sent back home to our apartment, which is just thirteen blocks north of New York-Presbyterian, the hospital where she’ll ultimately be transplanted—if our luck continues to hold.
I’m sure you can imagine how rough things have been of late for both of us. I feel like I’ve spent the greater part of the past three weeks driving from one hospital to the next, while Mrs. T’s assault-and-battery sufferings make my “troubles” look like namby-pamby kid stuff.
As I tweeted the other day:
Mrs. T hates it when I praise her in public, but I’ve got to say it: she is the toughest cookie ever to come out of the jar. I’d be whining around the clock if I were one-tenth as sick as she is. Instead, she grins and bears it like the gallant gal she is. She’s my inspiration, today and every day, and I’m lucky beyond belief to be married to her.
For the moment, though, we’ll both be more than happy to hang up our traveling shoes and stay put in upper Manhattan while waiting for the Big Call. Here’s hoping.One more thing: if you haven’t signed up to be an organ donor, do it now. Desperately sick people all across America—including Mrs. T—are hoping, very often against hope, to receive donor organs before it’s too late. Please give them a chance to start a new life!
UPDATE: As of now, no beds are open in New York-Presbyterian’s ICU, so Mrs. T and I are sitting tight in Connecticut. We’ll head south as soon as we get the word, but it could be a couple of days. Meanwhile, I’m going back to bed!
UPDATE (2): Mrs. T now has an ICU bed in New York. We are sitting tight in Connecticut, waiting for official confirmation that she’s been approved for transfer via helicopter—later tonight, I hope.
UPDATE (3): Well, guess what? Mrs. T has now been officially cleared for airlift to New York-Presbyterian—but it turns out that they do not yet have an ICU bed for her, at least not yet. I doubt that either of us will be hitting the road until Tuesday (sigh). Still, she’s good to go!
(That was the polite version of my feelings at this moment. The uncensored version is rather more pungent.)
UPDATE (4): That’s it, I-T, it. Did I say “IT”? I am now officially BURNED OUT. I’m going to order a pizza, watch the silliest, most anesthetizing movie I can find, and go to bed shortly after sunset. After all…tomorrow is another day.