Heartfelt with Dr Melissa Walton-ShirleyView all posts »
The land of TAVI flows with frustration, milk, and honeyJun 6, 2012 10:10 EDT
The phone rang at 3 am. Startled, I swallowed hard against the cobwebs of night choking my feeble attempt to answer. "Walton-Shirley," I said hoarsely, pretending to be wide awake. "I can't breathe," said the voice on the other end. "I've called 911." I looked at the clock. The patient's ETA to the ER would be at least 30 minutes as he resides in another county around 18 miles east. "Okay," I said. "I'll call the ER and see you in a few minutes." I jumped out of bed, my feet searching in the darkness for that step-up between our bedroom and bath.
This was not an unexpected call. The patient had not allowed an echocardiographic evaluation in three years despite known aortic stenosis. He is in afib and has a CHADS-VASC score of 6 yet has placed his faith in a single baby aspirin three days per week as his only baffle against nursing-home placement and a diaper. He had a GI bleed three years ago on warfarin when his INR reached 5 with a negative upper and lower endoscopy and refused to be rechallenged. During this particular trip to the hospital, I was concerned and at the same time, somewhat annoyed. "There is really no reason we couldn't have headed this off at the pass," I said to myself, slamming the car door in the hospital parking lot, marching toward the bright lights of the ER glaring like a beacon through the sliding glass doors.
He was parked in room 5, lying on the gurney, head of bed straight up, wide-eyed with his wife standing at the bedside. As she saw me enter, she stepped outside the room and said, "He had a stroke last night at 5:30 pm. I did not tell him because it would have upset him." I peered over her shoulder and sure enough, his left upper lip obviously drooped as he smiled at me, totally oblivious that half of his face was not working. "Next time, you might want to tell someone as soon as possible," I said drily, noting he was eons beyond the lytic window (though not a great candidate) and trying not to be rude. His monitor beeped an afib rate of 48 and a BP 190 systolic. "I can't breathe," he said again as my stethoscope met his chest and was greeted with rales for the first time in my 20-year history of examining him. "Okay, to the MRI scanner you go," I said, as I ordered 20 mg of Lasix and made plans for his transfer to the stroke center.
His pilgrimage started just at the end of winter. It took him northward to the University of Louisville for excellent stroke care. An MRA confirmed no significant carotid disease, a moderate-sized middle cerebral artery distribution acute embolic stroke, good LV function, and an aortic-valve area of 0.7 cm2. He was placed on dabigatran 150 bid, clopidogrel, and aspirin. Out of respect for his age of 80 years and a creatinine of 1.7, I personally would have prescribed 75 mg bid, but his CHADS-VASC score, now upgraded to a frightening 7, caused his stroke team to form a bucket brigade of anticoagulants and antiplatelet agents in an effort to extinguish the fire ignited in his left atrium and hurled full force into his cerebral vasculature. Less than 24 hours after that discharge, he was admitted to the local hospital again for worsening heart failure. My partner stood behind me as I looked as his echo.
"Looks like a candidate for a TAVR," he said as I shook my head yes.
"The very first implant I saw was on film in Germany several years ago. I knew even then that this procedure had his name on it . . . but I'll never get him to travel," I replied.
I searched for the most experienced team in the region in TAVR work because an open procedure was absolutely not an option. Furthermore, I was concerned about getting past his endovascular graft he had implanted for a rapidly expanding AAA three years previously. In the year 2000 he spent three months on a ventilator with a trach and a G-tube after multivessel CABG despite his being sober of tobacco addiction for 30 years. There was no way he was going back into that hell or would pull his family into it with him if I could help it.
Dr Joe Fredi at Vanderbilt University greeted him warmly. His calm demeanor and gentle approach reassured my patient. "How many of these have you done?" the patient inquired. "About 80 or so," Dr Fredi replied, "And we've had great results," he added. "That's good," said the patient, and with that, the doctor-patient relationship was forged and a plan set into motion.
The cath confirmed his LIMA and his iliacs were the size of tree trunks, all but an engraved invitation for a TAVR. His saphenous vein grafts were beautiful and pristine despite a decade of wear and tear. The LV function was excellent with moderate AI noted. Repeat studies reconfirmed an aortic-valve area of 0.67 cm2. His PFT was deplorable so the surgeon could not turn him down for an open procedure quickly enough. His family held their collective breath as they awaited the final annulus measurements to determine whether he could get the smaller profile Sapien or the larger CoreValve. They likened it to the Old Testament promise to Moses of the "promised land," where life was easier and hope sprang eternal, except there was no guarantee my patient would qualify for the device that would more easily traverse his three-year-old endovascular graft.
Dr Fredi came around with the great news that the Sapien should be a perfect fit. He underwent a pacer implant for bradycardia then a lead revision two days later. He was discharged home, pale and weak but stable. He came back in just a few days with skin the color of alabaster and hemoglobin of 6.7.
The patient added a new word to his treasure trove of diagnoses: A Dieulafoy's lesion was the culprit—a duodenal vessel that reared its ugly head from the floor of his gut, whose only function was to spew forth precious iron and blood products into the toilet bowl. It was one of the largest they had seen but was successfully hunted and corralled by an endoscopic approach. He was placed on iron, which the patient loathed, turning his stool black as night, choking any semblance of an appetite he had left. His weight plummeted another 10 pounds for a total of 18. He was transfused to lowly hemoglobin of 9.0. Weak, dizzy, and short-winded, he then navigated back home again until four more weeks from his index CVA could pass.
The procedure took only short three hours. His wife and daughter parked themselves in the cardiac MRI/cath lab waiting area. They armed themselves with magazines and casual easy conversation that mothers and working daughters rarely have the time to enjoy. His daughter noticed a small bird that frantically pecked in desperation at the waiting room window in a failed effort to get inside. The small child inside her with magical thinking emerged, secretly worried it was an omen that her father was struggling just a few feet away on the operating table, a notion she dismissed with logic then blushed at the absurdity of the thought. They welcomed the distraction, though.
Dr Fredi's nurse Sonja kept them updated by both phone calls and personal appearances, and he soon emerged and took the patient's family members, who had grown in number, to a small discussion room. "It went great," he said, deservingly proud of his accomplishment. The night passed without incident.
The patient required only three hours of ventilator management postoperatively, but he coughed incessantly from the very moment he was extubated. Despite his tongue being dust, he could not breathe with good O2 sats. He was discharged home on around the sixth post-TAVR day but stayed home for a total of three hours when his wife contacted me describing Cheyne-Stokes respirations. He hopped back to his local hospital for a few hours and then was transferred back to the tertiary center.
With a NT-proBNP of 5000, he diuresed well, but he continued to complain of shortness of breath. His troponin of nearly 25 one week post-TAVR was assigned to intraprocedural high-rate pacing and an expected massive troponin leak when his echo demonstrated good wall motion and a normal EF. He was discharged home again. He completed a week of in-patient rehab but still could not breathe. Finally, he underwent a right heart cath to measure his filling pressures. With good hemoglobin and a creatinine down to 1.7, his PCWP returned at 8 mm Hg. We had mistakenly assigned his symptoms to heart failure and diastolic dysfunction. His symptoms were now COPD-related as the ravages of a long illness exacerbated his pink puffer status to a level of misery due to deconditioning and atelectasis.
The patient kept insisting we were treating the wrong organ system. "My feet and legs are dead," he repeated 10 times per hour, a complaint 10 years in duration due to peripheral neuropathy and severe spinal stenosis he had stubbornly refused to address. His sensory deficits are so severe that he has to look down to see if he remembered to put on his socks. "I feel so terrible I want to die," he said repeatedly, a script that irked his family.
His son, one of the busiest real estate agents in the region, and his daughter were incensed at his ingratitude and his indifference to their sacrifice of time and effort. Their time away from work and family was only viewed as an imposition after he dismissed their efforts as meaningless, or worse, little acknowledged them. His wife of 60 years stood at his bedside at age 82 for up to 36 hours refusing to leave him. When he was choking for air, she crawled up into the bed with him, cradling him like a baby. She spoon-fed him and gave him his baths. Unbelievably, he became annoyed when she finally agreed to lie down for a few minutes and asked her to get back up to hand him the urinal that stood at the ready only inches from his hand.
His children, grandchildren, son, and daughter-in law drove back and forth 90 miles one way off and on for weeks, sometimes driving twice in one day. They fatigued of his complaints and seeming ingratitude. Depression, stroke, and general anesthesia had teased and twisted his personality into an unrecognizable and most unlikable human being. The family worried if they had done the right thing. Nearly three months from the fateful night of his presenting with stroke and heart failure, they were stuck with a pitiful, ungrateful human being that bore no resemblance to the quick-footed basketball guard for Center High School in 1948. Any team of cheerleaders keeps cheering as long as their athletes are playing with heart, but this patient had none.
After a week of trying to keep up with the pill boxes he kept getting mixed up, coaxing him to eat, encouraging him to walk to the point of madness, his family requested more lab work. His hemoglobin was 12.2 despite being off iron for a week. His creatinine was at an all-time low of 1.5. His blood pressure was excellent. "You look great on paper," I said, "except for your NT-proBNP level of 13 400. I think there is something else at play here, like arthritis." (Secretly, I hoped we had not missed a malignancy). I reasoned that with a NT-proBNP of 5000 his PCWP was only 8, so hopefully at best he was now 16 or 17 at most.
"I found you are vitamin-D deficient, and we will correct that. Maybe that will help since you are truly nutritionally compromised. I'll also give you some B12 because it won't kill you and it just might help, as your level is lower limits of normal."
I realized my desperation as I dipped my toe into the unproven world of alternative medicine even hoping for a positive placebo effect.
He then said, "I need to get your mom a birthday card."
"What?" I thought. This was the first non-Stanley-centric thing he had said in three months . . .
And today, my father, my first TAVR patient, went to rehab for an entire hour! He asked me how Tony, my husband, is doing. Is this the same person we have shamefully and simultaneously loved and loathed for the past three weeks? Indeed it is, only nicer . . . miracle of miracles!
As a family, we are fully accepting that an elevated NT-proBNP level is a very poor prognosticator no matter the etiology, but there is a glimmer of hope in that all other parameters are getting better. We wrestle with the "just because you can do something doesn't always mean you should do something" philosophy, wondering if a patient with end-stage COPD and excruciatingly painful neuropathic pain should undergo a TAVR, but we feel blessed beyond measure with that small utterance about my mom's upcoming birthday.
For now, we just remain grateful there are programs that offer this procedure and there are newly planted programs that are started to bud, like the Jewish Hospital program in Louisville, KY, and other programs being planted around the world. We laud it as a savior for aortic-stenosis patients for centuries to come, a lifeline for patients who were historically relegated to choke to death slowly with no other options.
We are grateful for Dr Joe Fredi and the entire Vanderbilt University Hospital team. Their professionalism and expertise are unsurpassed. Despite the fact that my father, whom I have loved more than life and who would most certainly put the "D" in dysfunctional by anyone's definition, never ruffled the Vanderbilt heart team, who remained steadfast in their treatment goals with courtesy and patience despite his newly acquired frequent-flier status. After this long three months of hard work, thousands of miles traveled, lost sleep and frustration, our family now finds itself firmly planted in the Promised Land offered by the miracle of what is TAVR. We are hopeful and ready to sample a taste of the milk and honey that flows in every family when quality of life improves, and no matter the outcome, will always be appreciative for the newfound hope that this life might once more be worth living.