Taking it to the Streets

A thousand Nashville, Tennessee high school students walked out of class last Monday, April 3rd. They marched to the State Capitol to protest the Covenant School massacre. As everyone knows by now, three nine-year old kids and three sixty-something adults were brutally murdered by a heavily armed person who was, in turn, killed by two incredibly brave officers. 

The mind-numbing details of all these mass murders run together. There is no reason to discuss them any further here, except to say that guns are the number one killer of children in the United States (5.6 per 100000, versus an average of .3 in peer countries.)

45,222 kids under eighteen died by firearms in 2020. Think about that. 45,222 little caskets. 45,222 funerals. 45,222 broken-beyond-repair families.

What can be done? Background checks. Red flag laws. Banning civilian purchase of assault rifles and bump stocks. Our representatives in Congress, and our Senators, the ones we all voted in to act, to do something, either don't have the numbers to enact meaningful legislation, or, even worse, just refuse to.

It's time for a National Day of Protest. Every high school in all fifty states, not just the blue ones, follow the example of your brothers and sisters in Nashville. Organize on social media. Pick a day (or two, or three) and walk out. Refuse to go back until you are heard. 

And we will walk with you.

Song of the Day:

 

Ok, here's part two of Tougher Than the Rest...

Danny tried hauling himself out of bed but was exhausted from the coughing. He believed illness had a specific gravity--the sicker you were, the greater the gravitational pull and it seemed to double or triple in the morning when he felt like this, as if he was on Jupiter instead of Earth. Lately he seemed to have moved there. Anyone knocked out by the flu who found it a Herculean effort to flip over in bed or even just claw for a tissue knew the feeling. He tried once, then twice, to rise but Jupiter pressed him back into the bed. He breathed heavily and contemplated this latest crisis.

 Gravity had other effects on Danny. It caused his formerly boyish face to droop into semi-Nixonian jowls. Danny still had his full, dark-brown hair though-- self-described as “luxurious”-- big, expressive dark eyes, and a literally boyish figure. The latter was not by design but was instead the result of another unfortunate symptom of CF, malnourishment. He weighed about 130 pounds on a good day but didn’t have many good days. His slight frame made him look taller than his actual five-foot nine. Despite the jowls, because of his hair, people almost always guessed he was at least ten years younger. Danny told them his immaturity kept him looking young. He had finally outgrown his youthful recklessness and heedlessness. That was a good thing because Danny Martini really needed to be a grown-up now.

April was in the kitchen during this whole sequence and so was unaware of the crisis. She came back with two cups of coffee and her smile disappeared instantly as she saw Danny’s face and sensed something was amiss. She hastily set the coffees down on her nightstand and said, “What’s wrong?" Instead of telling her he went with the “picture is worth a thousand words” approach and just held out the bloody tissue. What a bonehead. “Danny!” April shouted, but at least this time with good reason. “What happened?!”

“I coughed up blood,” he said (now he tells her). “I’m okay. It stopped.” He tried to sound reassuring but instead sounded naïve; if it happened once it would surely happen again.

“But you coughed up blood! What does it mean? Oh my God, Danny!” April said. She started crying.

“I don’t know, April. It’s never happened before but it did stop almost immediately,” he said, trying to put a good face on things. Neither he nor April bought it.  “I’m calling Sacks’ pager right now,” he said. Dr. Walter Sacks was his Upstate pulmonologist, and the best lung specialist Danny ever had. Danny trusted him completely. For all his absent-mindedness, Sacks answered his pages promptly, and he returned Danny’s call in fifteen minutes.

“It’s Dr. Sacks. Did you page me?”

Danny hesitated slightly then said “Yeah, I coughed up some blood this morning. What do I do?”

Sacks was a clinical wizard but could be clueless and inappropriate at times. This was one of those times. “Well, don’t cough up any more,” he said with an appropriately inappropriate chuckle. Danny sometimes wondered if Sacks was on the spectrum.

Danny rolled his eyes, and sighed. Fantastic time for hilarity, he thought. “Can’t make any promises, Doc.” Even though Danny was five years older than Sacks, he never called him Walter, as other adult patients did. He respected the position of authority.  “How much should I be worried?” He went into the duration of the incident and the amount.

April interjected, “Ask him if we should call 9-1-1!” she stage-whispered. Danny shot her a look. Sacks went into a monologue about weakened capillaries blah blah blah and Danny tried to listen, but all he could think about was the troubling milestone he just reached in this fucking disease. “Should we call 9-1-1?” April repeated, and Danny nearly shushed her but thought better of it. The Great and Powerful Oz would’ve exploded.

Sacks finally got around to saying something reassuring.  “It looks a lot scarier than it really is. If you want to come in for some PFTs (pulmonary function tests; breathing tests that measure the strength and capacity of lungs) you can, but they won’t tell us much, really. You should probably come in and have the conversation about being listed.” The use of “The” connoted inevitability to Danny. “Being listed” needed no explanation in the CF community. It meant being listed for a lung transplant. When a CF patient’s illness had backed them into a corner, a lung transplant was their last, really their only chance. Nonetheless, a lung transplant was a huge, complicated decision and a permanent step. Danny called back after eight-thirty, and they squeezed him in to see Sacks that afternoon.

April was quiet, a quiet nervous wreck, as the two sipped their coffee. She had a habit of looking at the worst case scenario in times of crisis. Danny, as he grew older, learned not to get ahead of himself.  He said “Don’t get ahead of yourself” quite a bit, so of course he said, “We can’t get ahead of ourselves. Sacks didn’t sound worried at all.”

“Yeah, well, how much blood did he cough up?!” she snapped, then quickly said, “I’m sorry.”

Danny reached over and enveloped her in a hug. “It’s gonna be alright, April. I promise.”

“Danny, I’ve got an important meeting at 9:30. Do you want me to cancel it?”

“No, God no. Go to your meeting. I’m fine here. If you can come to the doc’s with me later, that would be nice.”

“Yeah, yeah, sure I can. I’ll meet you here at, what, two?” She rose from her chair, grabbed her purse and put her coat on.

Danny got up and wrapped his arms around her and smiled. “Two is fine. Have a good meeting and see you later. I love you.”

“I love you too, Daniel. I’m just worried,” April said, worried.

“Aw, it ain’t no thang!” Danny said and both of them laughed at how ridiculous he sounded. She blew him a kiss and left.

Danny put another pot of coffee on and whipped himself up an omelet. Despite having an omelet for breakfast every day, and over fourteen hundred eggs a year, Danny’s cholesterol was like a marathon runner’s. Until it went up he was gonna keep on eating his omelets, and maybe even if it went up. He sat down to breakfast in the silence, listened to his stupid crackling lungs and wondered what other terrible surprises they had in store. He put the stereo on, loud, to drown them out.

While he ate breakfast, Danny thought about that dinner he had not long ago with his friend, Bill Huntley. Danny and Bill met in the CF clinic about ten years earlier and became fast friends. Both were bright, with sardonic senses of humor, and that was about all they had in common.  Danny was a high school graduate who grew up in a broken home (correction: many broken homes). Bill lived in the same house his whole life in a stable, two-parent family and graduated from law school in California. Despite his illness, Bill was a successful attorney who had just landed a big wrongful death payday. Money was the least of his concerns.

Cystic fibrosis was the most of his concerns.

Bill was a month younger than Danny but had a much more advanced case of CF. He was already using portable oxygen and had been on the lung transplant waiting list for a few months. Danny watched Bill’s health steadily plummet and knew when he looked at his friend, with his oxygen and his diabetes meter and his transplant beeper, he was looking at Future Danny.  That evening, Bill slowly slid into the restaurant booth. He was obviously shaken, which was unusual for the normally unflappable Bill Huntley.

“Geez, what’s the problem, Huntley?” asked Danny. “You ok?”

Bill looked at Danny, then away. “I got the call. They have lungs for me.” Danny started to ask a stupid and rhetorical what the hell are you doing here?  follow-up question, but thankfully Bill cut him off.

“I told them no,” Bill said, with an odd mixture of anguish and resignation. And finality.

Danny’s first instinct was to scream at Bill, to ask him what the hell was he thinking, that this was his shot, but Danny wisely held his tongue. The decision was already made and all the yelling in the world wouldn’t change things or do any good now. Instead, Danny shut up and listened.

Bill then said, in a present tense that was no longer an option, “I don’t want to go through all that. I want my lungs to work!” They both realized two things at that moment; one, Bill wasn’t going to get another call from the transplant people; and two, his lungs weren’t going to work. Four months later, Bill Huntley, Future Danny, was gone.

If Danny was ever listed, if he ever got the Call, would he hesitate, too?

Lung transplants were performed as early as 1963, but acute organ rejection by the host’s immune system was the Mount Everest that transplant teams needed to scale before they could consider the complex and risky surgery successful. The body’s immune system is always on guard and loyal to a fault; anything foreign the immune system encounters, a bacterial infection, or a transplanted organ, is considered an interloper and is attacked. Lulling the immune system into a truce wasn’t possible until the use of powerful immunosuppression drugs like cyclosporine in the late seventies.

The downsides to immunosuppressants are significant. They often cause diabetes, osteoporosis, high blood pressure, kidney disease, and even cancer. Most worrisome, by tamping down the immune response, they leave transplant patients more susceptible to infection. Living on that medical tightrope meant, on average, five-year survival rates for lung transplants hovered around fifty percent. Danny had a lot to think about, but was tantalized by the idea of even five years of good health.

 

April got to Danny’s at ten minutes to two, punctual, as always. She looked at him intently and pushed the hair out of his eyes. He needed a haircut. He always needed a haircut, it seemed. “How are you feeling?” she asked him. She was afraid to hear the answer.

“I’m fine, April. Really,” Danny said. As far as I know.

Danny drove, and he and April parked in the Upstate garage. They crossed the skyway to the registration desk. They were about fifteen minutes early--Danny was always punctual, too. Danny signed in at the clinic and because CF patients risked cross-infecting other CF patients, they isolated Danny in an exam room. April joined him. “How was your meeting?” Danny asked her.

“Fine,” she said, “Did you cough up any more blood?” Right to the point.

 “No,” Danny said, “That was it, this morning.”

“That was enough!” she said. “God, Danny, that was so scary!”

 “Let’s not get ahead of ourselves,” he said, yet again. There was a knock on the door. It was Toni George, a twenty-year veteran of the CF clinic. She and Danny were old pals. Toni took vitals (blood pressure, fine; temperature, fine; and oxygenation, or Danny’s blood oxygen percentage, 93 percent, crappy). Danny and April followed respiratory therapist Connie Van Zandt, another clinic veteran, to another room where Danny did his PFTs on a breathing machine called a spirometer. PFTs measured lung function; how much air Danny took in, how much he exhaled, and how quickly he did it.

Danny put on nose clips, stood at the spirometer, and moved the adjustable arm to a comfortable position. Then he wrapped his lips around the disposable mouthpiece, like a scuba diver, and inhaled as fully and deeply as he could, and then forcefully blew all the air out of his lungs as fast and hard as possible until he could exhale no further. That measurement was called Forced Vital Capacity, or FVC.  The amount of air forced out in the first second is called Forced Expiratory Volume 1, or FEV1. In terms of lung function evaluation, those were the two most important measurements. Regular PFTs enabled the staff to chart a patient’s improvement--or in Danny’s case, regression. Danny always blew his brains out (figuratively) as he vainly tried to outdo himself. Connie noted and appreciated it (“Danny gave his best effort.”)

Danny’s PFTs were down over ten percent. The exertion made him cough hard for a few minutes, but no more blood, at least.  After PFTs, Danny and April sat down with Dr. Sacks, who began explaining the procedure for getting on the lung transplant list. Danny listened intently, but silently. He had this conversation before, years ago. That was a memory best forgotten. April didn’t interrupt once. Normally, April tended to jump in with questions and finish sentences.  Here, the sentences were so foreign she just said nothing. Sacks began to explain the extensive screening process. “They will have to do repeated lung testing, an electrocardiogram, an echocardiogram and a heart catheterization, tissue typing to make sure your tissue and the donor’s are a match, a CT scan, a bone density test, a prostate exam, and even a colonoscopy. Oh, and a few gallons of blood,” Sacks said with a chuckle as he finally came up for air.

The ideal patient was mostly healthy except for his lungs. The screening process had to rule out compromising diseases like cancer. And no smokers need apply. “You’ll be shuttling back and forth to the transplant center for months, maybe years, until you’re ready,” Sacks told him. “You can’t, or shouldn’t, have a transplant too soon. A transplant is not a panacea. It’s a high-risk operation with its own set of problems. Timing is everything, Danny. If you’re too healthy, it’s too soon. But wait too long and you might not survive the surgery or its aftermath.” Danny and April looked at each other wordlessly. “Timing is everything,” the doctor repeated. “I recommend the University of Pittsburgh transplant center, but your insurance might steer you elsewhere.”

Sacks then dropped more bad news. “Your labs show pseudomonas (a kind of stubborn bacteria common to CF patients) and you’re going to have to do a couple weeks of home IVs,” the doctor said. Danny groaned. He knew he needed to stay as healthy as possible to be listed for some future lung transplant, but IVs, to use the highly technical medical terminology, sucked.

A nurse set up Danny’s PIIC line right in the exam room. A Peripherally Inserted Central Catheter line was inserted into a large vein in Danny’s arm. That vein carried blood to the heart. The PIIC line carried the medications Sacks prescribed.  The prescriptions arrived by courier in ice-packed syringes shortly after Danny got home. He infused, or injected into the catheter, two powerful antibiotics, one after the other, for two weeks. He used the SASH method to turn a bewildering and complicated procedure into a manageable one. SASH stood for Saline-Administration-Saline-Heparin; he flushed the PIIC line with saline solution to clear it, administered the dose over a period of minutes, flushed again with saline and then used heparin, an anticoagulant, to prevent pesky blood clots.

Danny mastered the procedure, but he hated it, hated everything about it. He got a little grumpy, especially in the morning. One morning he was working his sales job at Colozzi’s, the mom-and-pop appliance and video store where he worked off-and-on since 1984. A woman came in lugging a VCR. Even though it was a warm day, Danny wore a long-sleeve shirt to hide the PIIC line and related tape and gauze. “How can I help you?” he asked.

“This VCR doesn’t work!” she snapped.

Danny looked at her receipt. The VCR was eight months old, only eight months past the return period, he thought. “What’s wrong with it?” Danny asked.

“It just doesn't work. It’s never worked,” the lady said, helpfully. Danny felt a little bubble of annoyance threatening to make its way to the surface and pop.

He dutifully plugged it in, hooked it up, and put it through its paces. “Seems to be working okay now. Can you- “.

The lady cut him off mid-sentence. “It doesn’t work! I want a refund! It’s not fair!”

Pop!

Ah. A Victim! he thought. It’s not fair! Danny rolled up the sleeve on his left arm, the one with the PIIC line and the gauze and the tubing and the tape and even a little blood. He showed her his arm, in all its technicolor glory, then asked her “Is this fair?

The lady just gaped at him, or more accurately, his Frankenstein’s Arm. She silently gathered up her VCR and beat a hasty retreat. Adrian, one of Danny’s coworkers and a talented caricaturist, memorialized the moment with a cartoon of Danny, albeit with some editorial license, with his arm exposed, angrily yelling “Is THIS fair, you dirty bitch?!”  Danny’s CF was fair game in the rough and tumble world of Colozzi’s Appliance. Once, when Danny coughed up a tiny bit of blood, he showed it to Adrian, then threw the tissue in the trash. Adrian  promptly sketched out a “Biohazard” warning on a scrap of paper, complete with skull and crossbones, and taped it over the trash can. Danny loved it and put it in a place of honor above his home computer.

Danny put in his two weeks of IV therapy, grumpy all the way. He did follow up bloodwork and visited Dr. Sacks, who said Danny’s lungs sounded much clearer. Sacks had the IV team pull the PIIC line and Danny went home, if not exactly happy, happier. He bought himself some time. Until the next time.