November 21, 2000 - Part I
Dr. Miller watched Kai confidently roll into the room, offering a smile at the receptionist instead of a scowl as she held the door open for him. He carefully maneuvered to the couch where he usually sat, transferring quickly and relatively effortlessly. His leg must be nearly healed, she thought, observing as he gripped the edge of the couch with one hand, then used his other to adjust his wheelchair before pulling his legs one by one until they rested on the cushion, allowing him to stretch out.
He sat like that a moment, as if deciding if he were comfortable, frowned, then shifted his weight, hands planted on either side of his body, pushing up as he glanced around the room. Dr. Miller had the couch, the armchair where she normally sat, then two other chairs, not only to give patients an option, but to provide additional seating for families or couples, or on the occasion where she’d recommend a client bring a guest.
Kai indicated the two other chairs. “Do either of those recline?”
Dr. Miller nodded, pointed to the leather chair that served as third base to the couch’s second and her home plate. Kai transferred back to his wheelchair and pushed the short distance to the recliner, locking his wheels. He lifted his feet off the foot plate, planted one hand on the cushion, the other gripping the edge of his seat near the wheel, and started to lift his body. But the recliner spun when it wasn’t open, and the action made it turn away so he had to react quickly to sink back into his wheelchair and not get dumped on the floor. He grunted in frustration, adjusted his positioning and grips a few times, but wasn’t able to manage it. Finally, he looked at Dr. Miller.
“Could you?” He nudged his chin toward the top of the recliner.
Dr. Miller rose, gripped the top to steady it with his cue.
“Just. Don’t let it move,” he said, as he planted one hand a little farther back on the recliner’s cushion, heaving his body up and onto the edge, quickly gripping the armrests since even though Dr. Miller kept the chair from rotating, it still wobbled a little with his weight. He sighed. “Don’t let go yet,” he commanded, before using his firm grip to help settle himself back in the seat. He adjusted his legs until they were straight, leaned over to shift his wheelchair out of the way. “OK, thanks,” he said as he pulled the lever on the side, using his hands to help press his body back enough to aid the mechanism in opening the recliner fully. As Dr. Miller retook her seat, he finished adjusting his body, settling it until he was comfortable, letting out a long sigh. “I got the all-clear from my orthopedist on walking Friday. My hips and back are killing me,” he said as if in explanation.
Dr. Miller nodded; Kai normally didn’t explain himself unless she prompted him (sometimes repeatedly), and he never asked for help, either. She wasn’t sure if it was simply her limited contact with him, or if it were a sign of improvement. Allowing himself to rely on others--emotionally, at least--was certainly something Kai struggled with.
“That’s good news, then, right?”
Kai linked his hands and pushed up above his head, stretching his shoulders and upper back. “Yeah, though it’s possible I might never be able to go without the crutches again.” Kai shrugged, leaned back in the recliner, almost as if he were ready to take a nap.
“Does that bother you?”
Kai thought about it a long time. “On a certain level, I guess. I worked so fucking hard after my transplant so I wouldn’t need them, and I’m right back to square one.” Kai sighed and pulled both hands through his hair. “But I’m walking, and I don’t have much more pain than normal, so I’m not going to complain. Plus Re was surprisingly cool about it,” Kai added, a small besotted smile slipping onto his face as soon as he mentioned his current girlfriend’s name.
Initially, Dr. Miller had frowned on Kai starting a new relationship so soon after his last, encouraging him to focus on school and working through his anxiety, but it had become clear pretty quickly that this new girl was good for him. With her encouragement and support, Kai had been slowly breaking out of his shell, and with a few exceptions--like his stress about his history midterm--his anxiety had been better managed, too.
“So then you’ve been good since I saw you last week?”
Kai took in a long breath. “Friday, I went out with my crutches for the first time in a long time.”
Dr. Miller noticed that Kai didn’t seem nearly as restless as he normally was during sessions, making a note. Perhaps that, more than anything, was a sign of improvement.
“With Renee,” Kai added. “I wanted her to be the first to see me walking again, plus . . .” Kai shoved his sleeves up, then pulled them back down, giving his hands something to do. Still a little restless, then. Maybe she’d thought too soon. “It was kind of a test,” Kai admitted.
“A test?” Dr. Miller wrote that down. It was interesting to hear Kai say that; victims of abuse often tested their friends and lovers, consciously or not, trying to see how much the other person could take before they finally abandoned them.
Kai scratched the side of his nose. “Re’s been cool with everything--she even redid her bathroom for me--”
“So you told me last week.”
“But the crutches are pretty obvious, and I guess . . . I just needed to know how OK with all of this,” Kai waved his hand over himself, extending the circle to his wheelchair, parked and empty nearby, “she really was. You know? It’s easy to say you’re fine with something in theory, but in practice . . .”
Dr. Miller jotted a few notes. “And did she pass?”
That same smile again, one that somehow managed to seem so natural and yet look so foreign on Kai’s face. “Yeah. With flying colors.”
“That’s good, right?”
Kai’s smile broadened, and he nodded. Then he blushed. “We had sex, too. Not vaginal sex, not yet, but . . .” Kai had spoken a bit, at their last couple meetings, about Renee’s past and how that affected her issues with intimacy, how Kai was willing to wait but was getting impatient despite everything he’d told her.
“But it’s a sign of trust. She trusts you not to hurt her.”
Kai nodded. “It’s . . . a little weird, you know? I’m used to being the one with trust issues.” He laughed, but it was a nervous, self-conscious sound, and she noticed his fingers wandering for something to occupy them.
Dr. Miller kept silent: one thing she’d learned relatively early in her training was when not to talk.
“I spent the night. We shared her bed, and had sex again in the morning.” Kai’s smile was still present, but fading, and Dr. Miller noticed the dip in his brows that suggested the hint of worry. “She says I make her feel safe.” Kai didn’t bother to hide his frown. That, perhaps, was certainly a sign of his improvement, or at least a signal that he really was comfortable with her now.
“And that’s bad?”
Kai sighed, closed his eyes. He was quiet for several moments, and she recognized he was doing breathing exercises to try to calm himself. Finally, he opened his eyes again, and though he seemed outwardly calm, worry was visible in his eyes. “I will keep her safe from everything I can,” he admitted. “But I can’t keep her safe from me.”
Dr. Miller lifted her notepad to hide her frown, pretending she was simply shifting her weight in her chair and didn’t want to drop it. “No one can keep anyone safe from everything, Kai. We’ve talked about this.”
Kai nodded reluctantly. “I know. I just keep waiting for the other . . .” His eyebrows scrunched up. “Foot to drop?”
“Shoe. Waiting for the other shoe to drop.”
Kai frowned. Shrugged. “English idioms make no sense.” He rolled his neck. “Anyway, everything is great right now, but I keep expecting Renee to wake up one morning and realize how fucked up I am,” he said with a twisted smile. “And she doesn’t even know about the crazy part.”
“I know, I know, that’s a bad word.”
“It’s just not conducive to your therapy to keep calling yourself crazy. It has negative connotations. And for someone like you, whose anxiety comes largely from your fear of exposing yourself emotionally to others--”
“Yeah, yeah, I get it,” Kai said petulantly, popping an index finger up reflexively, the ASL for “understand,” Dr. Miller had learned. Then, in classic Kai fashion, he changed the subject. “I had a panic attack in public on Saturday.”
Dr. Miller pursed her lips, took in a deep breath, and scribbled a few notes, including a reminder to go back to the subject of Kai worrying about protecting Renee from himself and his continued fixation on the word “crazy” to describe himself. She nodded to indicate he should elaborate.
“Jon knocked up his girlfriend,” Kai said after a long silence in which he evidently attempted to control his anxiety, his breathing consciously slow and deep, as well as figure out how to proceed.
“And this upset you?”
Kai bit his lip--hard--as he thought.
Immediately, he released it, testing his lip with his tongue--Dr. Miller couldn’t see, but she suspected he’d drawn blood--before shifting his weight in the recliner. Perhaps it was time to dig into her “Kai drawer” as she’d come to call it, and give him some props to play with so his anxiety wouldn’t spike and to ensure he wouldn’t hurt himself.
“I mean, I’m happy for him, really. Jon deserves a family of his own, but . . .” Kai spoke rapidly, almost without taking a breath.
“Kai. Deep breaths. Come on.” Dr. Miller led Kai through several minutes of focused, relaxed breathing until she could see the tension leave his neck and shoulders.
“It’s stupid,” Kai finally admitted. Dr. Miller opened her mouth to protest, but Kai spoke first. “I know, that’s a bad word, too.” He sighed, smoothed a hand over his face. “Jon is going to move out; it’s inevitable. And I’m scared. Scared of how things’ll change. Scared of being alone.”
Dr. Miller could see, despite Kai’s best efforts, he was heading toward a panic attack, fast. She continued to talk to him as she went to her desk to get him a dose of hydroxyzine. “Kai, I want you to focus on my voice, to follow me to that peaceful place in your mind.”
“I can’t,” Kai said, his voice wobbling.
“Why can’t you?” Dr. Miller asked calmly, grabbing a bottle of water from her mini fridge and approaching Kai.
Kai had his eyes tightly shut. “Because all I can see in my head is me, sick, alone. The more I try not to see it, the more I do.”
“Here,” Dr. Miller said, pressing the pill and the bottle in Kai’s hands. “Take this. Then tell me why you’re alone in your head right now.”
Kai dutifully obeyed, his fingers immediately reaching to peel the label off the bottle. They were shaking, though. “Because Re will leave as soon as I get sick. Because she’s disgusted or scared or both.”
“But Renee passed your test. You still think she’ll bolt at the first sign of trouble?”
Kai hugged himself tight, whether for comfort or as a way to try to stop his trembling, Dr. Miller wasn’t sure. “Everyone else has.”
Dr. Miller decided to leave that for now. “And Jon? You think just because he becomes a father that you won’t matter to him anymore? Even after all he’s done for you?”
Kai moved his head in a way that wasn’t quite a nod but not a shake either, almost as if he couldn’t decide how to respond. “He’ll need to put Vicky and his child first. It’s what you’re supposed to do. I don’t blame him.”
“But it still bothers you.”
Kai nodded firmly, squeezed himself more tightly.
“Are you afraid of dying?”
The question caught Kai off guard, and some of his building tension eased. It was a topic they’d skirted around whenever the subject of Kai’s life pre-transplant came up, or the transplant itself, but they hadn’t really ever gotten into it, partially because Kai always seemed to find a way to artfully guide the conversation away into something that was pertinent enough Dr. Miller let it go.
Finally, he shook his head. “No,” he said, but he hesitated, as if there were more, or he wasn’t quite as certain of his answer as he wanted her to believe.
Kai’s fingers fumbled again with the flimsy label--it was a generic brand, so the paper and glue were cheap and resisted easy removal. “I’m not afraid of dying. I’m afraid of dying alone.” Kai said it in a, “There, are you happy?” kind of way, and though he tried for a few more seconds to keep his relative calm, he soon burst into tears. “Fuck.”
“It’s all right, Kai. Tell me what you’re feeling right now.”
Kai cried for a few minutes, covering his face, his shoulders heaving, before finally replying, his words muffled but rapid, “Scared. Ashamed. Panicked. Foolish. I can’t stop crying.”
“That’s OK, Kai. We’ve been through this before. Crying can be a healthy way to release your emotions.”
“Crying makes me feel worse.”
“Because I shouldn’t be crying.” Dr. Miller made a few notes about how much Kai raged against tears in particular, suspecting there was more going on than merely his dislike at showing emotion against his will. It was definitely something she needed to explore more.
“What are you, a fucking three-year-old?” Kai snapped.
He took a few minutes to regulate his breathing. Wiped his eyes on his sleeves. “I have a right to express my feelings. My feelings are real. It’s OK for me to express my feelings.” Kai repeated this a few times, taking deep breaths between each. It was a mantra Dr. Miller had encouraged Kai to adopt to remind himself not to be afraid of his emotions.
“So the news of the pregnancy was why you had the panic attack the other day?”
Kai nodded. He wasn’t sobbing anymore, though a few stray tears still traced down his cheeks. “It hit me so fast. One minute, we’re waiting for our lunch, just talking about the situation, and then I realize he’ll need to move out, and boom. Next thing I know, the only sound in the diner is my ragged breathing and crickets chirping as everyone stares, aghast, wondering if the crazy crippled guy is going to pass out or die or something equally entertaining.”
Dr. Miller stifled a frown at Kai’s usual self-deprecating, sardonic phrasing, and instead, asked, “And did you?”
Kai laughed. “If this is hell, kudos to the guy with the tail and horns.”
Dr. Miller couldn’t resist her own smile as she shook her head. “Pass out. Did you?”
“I came close,” Kai said, growing serious again. “Someone called 911, the EMTs went through the whole fiasco, and I was too drained from the panic attack to protest.”
“And then what happened?”
“Jon drove me home, dosed me up with Valium, and I slept the rest of the day.”
Dr. Miller arched her eyebrows, her signal for, “That’s it?”
Kai sighed. “We talked about it, a little. He promised me that he would always be there for me if I need him, no matter what.”
“And you don’t believe him?”
Kai sighed again, more frustrated this time. “Of course I believe he’s sincere. But one day, not too far from now, he’ll have to choose between me and his family. Either he picks them, or he loses them. It’s inevitable.”
Dr. Miller made a note that Kai clearly distinguished his brother’s girlfriend and future nephew (or niece) as Jon’s “family” while excluding himself. “Let’s put this aside for a moment. You do have friends, though, right?”
Kai shrugged. “Jake doesn’t live here anymore.”
“But what about David? The one you grew up with? Whom you reconnected with on Halloween? Didn’t he help you study for your midterm? Isn’t he modifying his house so you can come over for Thanksgiving? Doesn’t he call you his brother?”
Kai nodded. “I’m supposed to go over there this afternoon to see if everything’s kosher, or if he has to do anything else.”
“You don’t think David would be there for you, in this hypothetical situation where you’re . . .” Dr. Miller glanced down at her notes. “‘Sick and alone’?”
Kai sighed. “He left me before. I don’t blame him, but if I’ve learned anything, albeit the hard way, it’s that I can’t rely on anyone to be there when I need them.”
A damning admission. Dr. Miller wrote that down and boxed it in. “Do you really believe that? Surely you don’t honestly think that of your brother, not after the past four years? And especially the past few months?”
“If you expect something, you’re always disappointed. If you don’t, you can be pleasantly surprised.”
Kai was going for jaded and disaffected, but Dr. Miller saw through him. “Tell me what you’re feeling right now.”
Kai hesitated, as if thinking about lying before finally admitting, “Depressed. Pretty fucking depressed. And it doesn’t help that I know I have no reason to feel that way.”
“Have you been feeling the need to self harm this week?”
Kai sighed. “Not really; I’ve been pretty good lately.” He held up his hands, then smoothed down his sleeves on each side to reveal his wrists. “No rubber bands.”
“That’s really good, Kai,” Dr. Miller said, jotting that down.
Kai scoffed. “It’s all Re. . . . Things would be perfect if I didn’t constantly worry about losing her. About her realizing what a mistake she’s made, how fucked up I really am, and how much better she could do for herself.”
“Do you really think about that ‘constantly’?”
Kai sighed. “I think about it a lot more than she could possibly realize.” He shifted his weight. “That’s the problem: she’s convinced I’m this cool, calm, confident guy who’s not afraid of anything.”
Impression management? Dr. Miller jotted down quickly, underlining it several times and starring it. She knew they were almost out of time, certainly not enough to go into detail on Kai’s express revelation that he felt he portrayed one version of himself to others--even those as close to him as his girlfriend--yet believed he was completely the opposite of that persona. She knew already, of course, that expressing himself freely was an issue, but she hadn’t quite realized how deep it went--and how it might potentially affect his anxiety. Still, she didn’t want to leave him without addressing it on some level.
“So once she realizes the ‘truth’ . . .” Dr. Miller said, using air quotes, following his logic train.
“Yup. Bubble burst, game over. Do not pass go, do not collect $200.” And there it was, Kai assuming that relationships would all end in failure. She wondered if he realized that beliefs like this could often be self-fulfilling.
“You presume that Renee is extremely shallow, and from everything you’ve told me about her, she doesn’t seem to be at all that way.”
Kai seemed to consider this, but said nothing.
“I also find it unlikely, especially in the past few weeks, that you’ve done such a good job pretending to be this supposed ‘other person’ that she’s falling for him instead of you.”
Kai frowned. “What do you mean?”
“People are complex. True, we can’t know how anyone will react in a given situation until they’re in that situation. But if Renee has really lived through her previous experiences relatively unscathed--and keep in mind I’m basing this only on what you’ve told me of her--then she’s a lot stronger than you’re giving her credit for. Just because you haven’t had a panic attack in front of her doesn’t mean she’ll bolt if it happens.”
Kai took this in, his expression unreadable, but not intentionally so. He seemed thrown by the entire concept. Finally, he composed himself. “So now is when you tell me I should sit her down and tell her about my anxiety.”
Dr. Miller nodded. “Keeping it from her isn’t doing you any favors. If you have a dialogue with her, like you did about your transplant and your MLS, then she’ll be able to understand and know what to expect. And, most importantly, it’ll be one less thing for you to worry about.”
“One less thing to be anxious about.” He drummed his fingers on the arm of the recliner. “I’ll think about it.” Normally a phrase that meant “no fucking way,” like when she had first suggested Kai try group therapy (until later, when she persisted, and he actually did tell her “no fucking way”), but this time he seemed sincere. He leaned over to test to see if the recliner closed the same way it opened, with the lever, and grunted in frustration when he realized it was the kind you needed to close with your legs.
Dr. Miller thought about offering to help, but decided she’d let him ask if he needed it. Not only did she not want to irritate him and potentially ruin their good rapport, but she was pretty sure Kai knew his limitations, at least physically. She watched as he used his hands to push his body forward in the seat; once reclined, the recliner no longer moved, which made things a little easier. Making sure to keep one hand gripping the recliner, just in case, he reached out and dragged his wheelchair closer, lining it up before lifting his legs over the edge. He had to be careful his hand didn’t stray too close to the footrest of the recliner, since it threatened to close--not completely, but enough to throw him off balance--from the strength of his upper body. So he readjusted his weight, moved his legs again with one hand, before finally making the transfer, lowering his body smoothly but carefully into the cushion of his wheelchair. He paused for a moment, as if to glare at the recliner before setting his feet in place, shifting his body back, and let out a relieved sigh.
“Remind me never to sit in that thing again.”
Dr. Miller stifled a laugh, especially when Kai used the side of his fist in a powerful thump to shut the blasted thing--which promptly decided to spin around once free of its reclined lock. Instead she said, “Have a good Thanksgiving.”
Kai nodded. “You too.” He hesitated a moment before spinning around to leave. “I can still call you . . . if--”
Dr. Miller nodded. “I’m not going out of town, so if it’s an emergency--as long as your life isn’t on the line,” she clarified, “in which case, go to the ER--you can call me and I’ll try to return your call as soon as possible.”
Kai looked immensely relieved. “I’m not planning on offing myself, but it’s only Tuesday.” Kai smirked, and Dr. Miller knew it was Kai’s way, but it troubled her, and she could immediately see he regretted the joke. “I’m OK right now, really. I just want to know what my options are. Just in case.”
Dr. Miller nodded. “Next week, I want to do some biofeedback and relaxation exercises. If we feel that’s taking too much time, we might want to consider two sessions a week again, if you think you need it.”
Kai’s eyes darted to the side before finally nodding. “I might. Thanks, Dr. M.”
The conference room was uncomfortably warm, and Dr. Ben Johnsen knew for a fact that most of the committee members hadn’t planned to work today, which didn’t bode well for Jon. Still, Jon had clearly put all his effort into his presentation: the lighted cabinets behind him were lined with X-rays and CT films though the light was off, and his laptop was set up with his powerpoint presentation all ready to go, the pull down screen displaying the title page in a large, bold font. Jon had also put on his newest, cleanest white coat--likely keeping it in his office in the dry cleaning bag until only a few minutes ago to make sure it was fresh, changing into it from another, more lived-in one. His hair was combed and as neat as Jon’s hair ever got, his tie serious and straight, and only someone like Ben, who’d worked with Jon closely for several years, would be able to tell how nervous he was.
Right now, they had the room to themselves; Jon had arrived early to set up, and Ben had finished his rounds fifteen minutes sooner than planned, so he’d taken a seat he knew one of the committee members wouldn’t use, slipped his briefcase with his own presentation materials under the table, and leaned back to wait while he sipped his coffee.
Jon was organized to the point of being anal, and in addition to his laptop and films had a stack of materials, professionally bound and ready to be distributed to each committee member, plus a rubberbanded bunch of index cards that seemed to be color coordinated, perhaps prompts for the speech portion of his presentation. Jon was definitely a “gunner,” a not-so-affectionate nickname for the super smart, highly motivated medical student, so named because they often used “gunner pens”--the mutli-ink kind with the knobs that let you switch colors from the same pen for taking detailed, organized notes.
Dr. J had to stifle a laugh when he noticed a couple of the familiar blue-and-white pens in the breast pocket of Jon’s white coat as Jon gathered up the spiral-bound booklets and began laying one in front of each chair. Unofficially, the seating was first come, first serve, but the committee membership hadn’t changed much over the years, and each person had a favorite spot. Woe betide the young doctor who chose the wrong seat for their first meeting with the committee.
This wasn’t Jon’s first rodeo, though; in addition to the several meetings he’d attended to plead Kai’s case, plus the one several months previously that this one was meant to reconsider, Jon had sat in or assisted on several of Dr. Johnsen’s cases while he was a fellow, and had met with the committee on one other occasion about four months ago for one of his CF patients.
Ben was surprised when Jon laid one of the packets in front of him.
“I made a few extra,” Jon said. “Just in case.”
Ben nodded, flipped through it. Jon was nothing if not thorough, including some of the limited published research on FS--most of it done here at JMH--along with some unpublished data. Dr. J was particularly impressed with Jon’s comparative analysis of the deleterious effects of the FS disease process with that of other transplantable ailments like cystic fibrosis and emphysema, complete with some full color photos, side by side, of several post-mortem lung tissue samples from CF patients and FS patients. The pictures, which showed massive fibrosis and destruction of the small airways, were almost indistinguishable.
“This is excellent work,” Dr. J couldn’t help saying, flipping to the back, where Jon had included a list of other material the committee could consult for more information, should they be so inclined. “We don’t deserve you.”
Jon ignored him, double checked he had everything in order for the fifteenth time, and then sat down, anxiously, to wait, trying to resist looking at his watch every ten seconds.
Ben gave up trying to engage Jon in conversation after a couple more failed tries, and simply drank his coffee calmly, wondering how much Jon was going to hate him in about thirty minutes.
Starting about five minutes before the meeting was scheduled to begin, the first members of the committee arrived, filing in, notebooks in hand, chatting glumly. It was clear that most weren’t particularly thrilled to be here, but they all nodded acknowledgments to Ben while at least having the decency to not glare at Jon.
The Jonesville Memorial Hospital transplant committee was comprised of seven members: three physicians, two nurses, one of the in-house lawyers, and a middle-aged woman who Dr. J wasn’t entirely sure what her training was, only that she served as a combination of an administrative and social-worker type role, and had for as long as he’d worked here. When she wasn’t making life-or-death decisions on the panel, she was in charge of the legion of counselors and other non-medical support staff that helped patients and their families navigate the waters of ill health, treatment, and death.
Once everyone had arrived, including a couple young men in scrubs Dr. J didn’t recognize and who were probably either surgery residents or non-pulmonary fellows invited to sit in on the meeting by one of the committee members, Jon began his presentation. As a formality, he introduced himself, thanked the committee for their time, explained the materials he had provided for them, and began.
If Jon hadn’t already impressed Ben with his materials and preparation, his presentation did it from the beginning. Jon had changed his strategy completely; instead of presenting more generally about FS, he’d chosen to focus on one particular patient as an example of why the committee should change its mind about universally disallowing FS patients from transplant consideration. By putting a face on the disease--in this case a handsome, if sickly looking fifteen-year-old boy named Martin Gomez--Jon was starting strong. Jon’s strategy being it was easy for the committee to reject all FS patients, but a lot harder when they had to look at someone’s photo and do it. Jon had used a recent picture, too; Dr. J had seen him take it only a few days earlier. It showed the boy, clearly smiling though his mouth was hidden by a surgical mask, the tubing of his oxygen cannulae leading out from above and beneath it.
As Jon continued, Martin’s photo stayed in one portion of the slide while his bullet points slowly filtered in on the other, comparing Martin’s presentation with that of another one of his patients, a boy of sixteen named Ivan Swansson with CF, whom the committee had approved to be listed a few months earlier and was already awaiting a match. It was a cunning move, and Jon’s passion and compassion for his job and his patients shone through. When Jon had fought for Kai, it had been personal. Though this situation was clearly different, Jon was showing as much care and determination for the rest of his patients as he had for his brother. It was admirable, but also a potential liability, Ben observed.
Jon continued, showing some more comparative slides like the one in his packet, illustrating the pathological similarities in the tissue of his example CF and FS patients. All of this worked up to Jon’s smartest move yet: compromise. He acknowledged that he understood if the committee wasn’t willing to put FS in the same bracket as more established diseases such as CF, but pleaded with them to at least consider a few cases a year. Jon promised that he would carefully screen his patients and ensure that only those FS patients with the greatest need and who he determined--based on various factors such as age and compliance--would most benefit from a transplant would even be submitted to the committee for consideration.
With a few final slides showing the massive fibrosis of Martin’s lungs, followed by another photo--this one without the mask, showing him smiling despite the oxygen cannulae--Jon made his final pitch. Jon encouraged the committee to consider pathology, rather than diagnosis, when making their considerations.
“A fibrosed lung is a fibrosed lung; the mechanism of disease as to how it got to that state should be irrelevant, if all other factors suggest the potential for a satisfactory outcome post transplant. Patients like Martin shouldn’t automatically be doomed to death because of their diagnosis. I urge the committee to strongly reconsider its previous stance on the issue of allowing FS patients to be considered for listing for lung transplantation. Thank you again for your time.”
Jon paused, as if hoping some of the committee members would engage him in questions or discussion, but none of them did. His presentation had been quite thorough, and Ben felt a flare of guilt knowing that if he weren’t about to go up there and say what he needed to say, Jon may actually have been able to sway enough of the members’ minds to make a difference. In fact, he was tempted to get up and walk out, and damn the consequences, because, frankly, he agreed with everything Jon said, even if he did feel Jon could stand a little more emotional distance from his patients. After all, Kai might never have gotten his transplant if Dr. J and Jon hadn’t had a unified front against the committee years ago.
Shaking his head, Ben stood up, his briefcase over one shoulder, and shook Jon’s hand, offering him a smile. “Whatever happens,” he said, “no one can say you didn’t do your absolute best.”
Continue to November 21, 2000 - Part II ------>