At the root of Frank Primerana’s medical epic is the headlong collision of a dormant genetic condition with an act of medical negligence. He told me it all started with a series of unusual disk herniations. The hernias – which occurred first in his lower back and later in his neck – were peculiar in that they happened without any trauma. The former required surgery first. The damaged disks were removed, and the spinal vertebrae were successfully fused together. The only hiccup in Frank’s recovery was that the bone growth material used in the procedure led to a small protrusion of bone from the site of fusion.
Frank’s next surgery was for the herniations in his neck, which beckoned him into the operating room with a tingling feeling that shot down his arm. The surgeon who operated on Frank’s neck noticed the bone growth from the last surgery, and he offered to fix it. What seemed like a generous offer for a 2-in-1 surgery experience — after all, all it required was for Frank to be flipped over mid-operation — resulted in life-altering consequences for Frank. When he woke up from the operation, Frank found that he could not swallow anything as a result of damage to his vagus nerve. Medical providers gave him hope for a full recovery, telling him that he had eight months to wait before his dysphagia — difficulty swallowing — could be deemed permanent. Unfortunately, it took him only seven months to develop his first case of aspiration pneumonia and end up hospitalized with a diagnosis of severe dysphagia. He had to accept that he would not get better. For the rest of his life, Frank would need a feeding tube and a thickener for the liquids that he drank. He would also be at increased risk for aspiration pneumonia, which happens when food or stomach contents cannot be properly swallowed and instead land in the lungs. Even drinking a glass of water, an action that he had done so many times without a thought, would never be available to him again.
Frank would later discover from an astute Doctor of Physical Therapy that his hernias were almost certainly the result of a genetic condition. Frank told me the condition had probably passed silently through his family for years before it emerged to produce his hernias, leading to his first hernia surgery, leading to his second hernia surgery, leading to his new journey with aspiration pneumonias. These pneumonias — of which he has had sixteen or seventeen — brought him to Penn Medicine, where he met Dr. DeLisser and Dr. Mirza.
Frank described Dr. DeLisser, his Pulmonologist, as “the quintessential doctor.” He knew immediately that he was in good hands when Dr. DeLisser called him just to see how he was doing. Frank trusts completely that Dr. DeLisser knows him well enough to decide when he needs to be hospitalized. “Just by looking at me he could tell,” Frank explained to me. “I didn’t have to say anything.” He is also deeply grateful for Dr. Mirza, an Otolaryngologist who also kept him tucked in the back of her mind outside of his usual visits. She had a flash of insight when discussing a new surgical technique at a conference and immediately thought that the procedure would benefit Frank. Dr. Mirza surprised him with an out-of-the-blue phone call outlining the treatment she had discovered. Frank was astounded that she was discussing his case at a conference, even when they hadn’t spoken in months. The surgery sounded like it had potential, so he agreed to try it. Since the procedure, he has only had one minor bout of pneumonia.
“I’ve been through the system a lot,” Frank told me when I asked if he had any insights to share about healthcare. Having had an untold number of interactions with different doctors, he has collected a lot of wisdom worth sharing. “Forget the medical part,” he said of becoming a good doctor, “you’ll learn that eventually.” It’s a statement that would make some people chuckle and others raise an eyebrow, but there’s an important kernel of truth that providers should keep in mind. Medical expertise alone is not enough to truly care for patients. “You could be the best physician in the world,” Frank asserted, “but if you don’t show me that you care, I won’t trust you.” And indeed, after all of his hospital visits and his broken trust, Frank doesn’t put up with anyone who hasn’t earned trust from him. “Can I fire my doctor?” he once asked after a physician in the emergency department changed every one of his medications without explanation. He could, and he did.
Over the phone, Frank was open, dynamic, curious, and sharp. I imagine that he would have had a magnetic presence in person. As a witness to Frank’s story, his medical journey seemed like a veritable roller coaster ride. But when I commented that his journey had a lot of ups and downs, he immediately corrected me: “Mostly ups.” His positivity shone throughout the call; it would have been easy to assume that he had always handled his situation with so much grace.
However, as he told me, coming to terms with his surgeon’s negligence was a difficult task.
The surgeon who injured Frank had said that it was common to flip a patient mid-procedure, but other surgeons who Frank consulted echoed a truth that was difficult to hear: no other neurosurgeon would have flipped him like that. Frank had trouble wrapping his mind around what had happened, knowing that it was not just an honest mistake, but rather a true act of negligence. Moreover, a malpractice suit, which can often be a way for patients to gain closure after they are harmed by a doctor, was not an option for Frank: The State of New Jersey requires notice of a lawsuit within 90 days of an incident — thus, the surgeon, who worked for the state of New Jersey, was protected once the 90 days had passed. By the time Frank confirmed that his injuries were permanent, the opportunity to file suit had long passed.
Frank sought out mental health treatment, which he said helped. It was evident, though, that what really got him through his toughest times was his religion. “It’s a big big deal,” Frank said of his faith as a Roman Catholic. When he is in the MRI machine, he prays the rosary, and he can always be seen wearing a scapular with St. Gregory and the Blessed Mother. Every time he goes for surgery, he sees a priest for confession. Frank described that his faith allows him to “accept the fact that there’s something bigger” and in that way, he can always free his mind of negative thoughts and face anything without fear.
Brooke Bernardin is an MS2 at the Perelman School of Medicine. Brooke can be reached by email at [email protected].
