Rob Fordiani wakes up lying on the operating table, his body shaking under the bright lights. He can't see what's going on, but he can feel the doctor's hands inside his right chest cavity, pulling aside the sliced muscle. The anesthesia inhibits him from complaining, but the dose isn't enough to keep him under. His body continues to shake as the doctor's hands sink deeper under the muscle, lifting and pulling away from the ribs. The feeling is painfully uncomfortable, as if a giant tick is burrowing its way into the bloody flesh. Rob calls out but he doesn't know if the doctor hears him, or if it's just all in his mind. The shaking becomes more vigorous. He must calm himself. He must relax to save his life. Just relax, he chants in his mind. Everything will be fine, just relax.

A wave of relief envelops his body. The shaking ceases, his mind is at peace, the numbness returns and he falls back into a slumber.

The doctor places a cold circular lump of titanium, no bigger than a silver dollar, underneath Rob's chest muscle, attaching it to some wires. With everything in place, his smooth olive skin is sutured together to complete the operation.

On October 2, 2001, the day of his 26th birthday, my boyfriend Rob was diagnosed with sarcoidosis, a pulmonary disease in which small inflamed groups of cells called granulomas form and attack any part of the body. No one knows what causes the disease and there is no cure. Most cases of sarcoid are mild, with symptoms merely resembling a common cold before disappearing. Because of this, there is no accurate documentation of how many people contract the disease, but the National Heart Lung and Blood Institute estimates the number is somewhere in the tens of thousands. Rob’s case, however, was very rare…and potentially very fatal.
The sarcoid scarred his AV node, causing a third-degree heart block, meaning the atrioventricular tissue that conducts the body’s natural electricity was not pacing his heart.
***
Rob marches into our apartment, irritated and exhausted. In his hand are a few papers – a lengthy email from the National Conference of Bar Examiners.

“My accommodations were denied,” he says angrily. “Go ahead, read it.”

He tosses the papers on the desk and I pick them up to read.

…You presented medical progress notes dated April, 2001- February 26, 2006 at which time the complaint was an injured knee from skiing. As this date of service is subsequent to the pacemaker implantation in 2001, and you were reported to have been skiing, we can only assume that your fatigue caused by the original diagnosis of complete heart block secondary to Sarcoidosis had resolved. There is no evidence of continued medical problems attributed to this condition. Therefore, it does not appear that accommodations are warranted due to this condition...

In a few weeks he has to take the Multistate Professional Responsibility Exam, a prerequisite to taking the Bar Exam. He had requested double-time and a private room to take the test since he suffers from fatigue and possesses a reading disability. The NCBE decided he had neither.

“I have to write a request for reconsideration by February 15th,” Rob says, completely pissed off. “I’ll send them every medical record and school record about me – they’ve fucked with the wrong guy.”

This happens all the time. He requests accommodations to compensate for his disability and he has to work twice as hard for them because no one believes he’s really disabled. The two Implanted Device Identification cards never seem to be enough to convince. Perhaps if he had a disability placard stuck to his car he would get more sympathy.

After making myriad phone calls to his doctors and schools, Rob lays down on the futon for his afternoon nap.

“My chest is tight,” he says, rubbing his sternum. “I’m tired, Chels. I can’t do this anymore.”

I cover him with two blankets and sit next to him, running my fingers through his thick black hair. He closes his eyes, in hopes to sleep away the frustration.
***
Rob woke up on the hallway floor of his home back in Clarks Summit, PA. He had blacked out again. It wasn’t a bad feeling. It was quite comfortable, the most comfort he’d ever felt. What he didn’t know was that it was the kind of comfort a person feels before they die.

The bouts of syncope were becoming more frequent. Dizziness, extreme weight loss, cold sweats, dry coughs, fevers, and chills – they were all becoming more serious. The first doctor believed the symptoms were due to low blood sugar. The second doctor found something much worse. After an echocardiogram of Rob’s chest, the cardiologist discovered his sickness had nothing to do with diabetes – it had to do with his heart. His pulse should’ve been at least 60 beats per minute – it was only half that.

After a third analysis at the University of Pennsylvania, the hospital wanted to perform an operation the very next morning because his condition was so severe. However, a battle with his insurance company wouldn’t cover the procedure at Penn, nor would they allow it to immediately happen.

“They were going to put me on a wait list a couple months long, and I said, ‘sure, you can go ahead and put me on any wait list for that, but I might not be there for it,’” Rob remembers. “When they asked why, I said, ‘because they might not have a live patient to work on by then.’”

Two days later he found himself lying on an operating table in the Gesinger main hospital in Danville, PA – an hour away from his hometown. Relieved but nervous about going under the knife, Rob still didn’t know what caused his heart to stop beating properly and why he needed a pacemaker at 25 years old.

After the pacer was installed, it was time to figure out what caused the heart block. Rob wore long sleeves that summer because he looked like a heroin addict. Every week he went for a check-up, the doctors would take at least 10 to 20 vials of blood from him for testing. When one arm ran out, they switched to the other. He still has marks from needles scattered along the bends of his arms.

In addition to blood tests, x-rays were administered, and spots were found on his lungs—signs of either sarcoid or lymphoma. Doctors wanted to perform a full biopsy by splitting him down the middle and taking a sample from each of his organs. Convinced that it was sarcoid and not lymphoma, Rob opted for a bronchial biopsy, a procedure that only requires a fiber optic instrument to be inserted down through the throat to take a sample of lung tissue. If the results came back negative, he would do the full biopsy. The results came back positive for sarcoid.

The only way to suppress sarcoid is with large doses of corticosteroids, namely prednisone. An average dose of prednisone is 2 to 3 milligrams per day. Rob had to take 60 milligrams per day in order to put the sarcoid into remission.

“That was tough,” he remembers. “You’re not yourself, and you’re very uncomfortable. You never feel satisfied with what you’re doing at the moment—if you’re sitting down, you want to get up and walk around. If you’re walking around, you just want to find a place to sit down. If you’re in your house, you want to get out and go somewhere and do something. And once you’re out, you can’t wait to get back home. It kinda drives you a little nuts.”

Getting used to the pacer was also difficult. He had to be careful not to strain his right side or the leads might pull out of his heart. Sometimes if he slept on his stomach and his right arm raised above his chest, the energy from the pacer would shock him awake. Every time he went in for a check-up, he’d ask the doctor if his heart was beating on its own, in hopes that the pacer could be taken out. But each time, his doctor would deny his request without a second thought. Nothing short of a miracle could fix his condition. Little did he know, Rob would have to wait a year and a half for that miracle.
***
After bombarding the NCBE with several phone calls from doctors and nearly 60 pages of school and medical documents, Rob was finally granted his accommodations for the Multistate Professional Responsibility Exam. At home in Sausalito, he sifts through the stack of medical records he obtained from his physicians back East.

04/09/01
This is a very pleasant 25 year old athlete who presents to the office for an evaluation of
recurrent dizzy spells…he feels tingling all over, he feels sleepy, he feels like he’s going
to pass out…it could be related to sugar.

05/04/01
Complete heart block…

10/02/2001
This 25-year-old male was evaluated at the office July 23, 2001, for possible sarcoidosis. A chest x-ray and CT scanning has demonstrated…suspicion for either sarcoidosis or lymphoma…the possibility of cardiac sarcoidosis has also been raised.

…proceed with fiberoptic bronchoscopy and transbronchial biopsies…

…Bleeding was mild-to-moderate and did require some epinephrine instillation along with saline suction.

“Epinephrine? What does that do?” I ask.

“I’m not quite sure,” Rob says as he sits down at the computer to look it up. After a few moments of reading, we discover it’s adrenaline used to prevent a cardiac arrest.

“Well, that’s scary to know,” says Rob.

He now knows why his grandfather was so relieved when he woke up after the biopsy. And because of a family member’s accidental slip of the tongue, he also found out his heart had stopped for almost a minute when the pacer was activated during the operation. It’s mysterious and upsetting to me that this type of information was kept from his knowledge.

Having sarcoid and the pacemaker affects his daily life. He has to take an afternoon nap every day to recover from fatigue. His eyes are light sensitive, so he needs a particular brightness setting in order to see properly. He must maintain a healthy diet, and exercise regularly without straining his right side. He can’t take the MUNI subway, electric powered buses or trolleys because the strong electromagnetic fields make him sick. If he’s traveling by plane, he must inform the security check that he has an implanted device. A normal check-up requires an EKG every time, and the price of health insurance is through the roof. Even I have to be careful when being affectionate – if I rest my head on his chest or rub his shoulders, I have to take care that I don't hit the pacer.

“You feel like damaged goods, and there’s no return policy. So you make do with what you have, ” he says with a slight smile.

I worry about him every day. Whether it be for a moment or a long while, I worry. I worry because I love him, and because I love him, I pray for him. While I'm not an overly religious person, I am spiritual, so each night I pray for God to keep him from harm. I do this because his sarcoid could come back or his heart could fail at any time. I like to think that the worst of the damage has been done, but no matter what happens, it's important that I'm there to help him through it.
***
A year and a half after the pacer was implanted, Rob went for his annual check-up. Like always, he asked the usual question.

"I know what you're going to say," the doctor said. While he doubted Rob's heart had altered in its lack of self-reliance, he still checked. After some testing, the doctor noticed something strange. He decided to create an artificial heartbeat by running the pacer up to 180 beats per minute.

"When you're sitting still and your heart's beating like that - it's an odd feeling," Rob recalls.

Suddenly, the doctor shut off the pacer…and discovered that Rob's heart was pacing on its own. After several phone calls to the pacemaker company, fellow physicians and other experts in the field, it was confirmed. Somehow the scarred AV tissue was conducting on its own, an act that is physically impossible.

"I think between the medicine, some luck, and a whole lot of will power - I think that's what spurred that odd phenomenon," Rob says.

To this day, Rob is only reliant on the pacer less than one percent of the time. Other than that, it acts as a monitor, to kick in if anything goes wrong. While he would like to have the pacer removed, he knows it’s safer to keep it in, so removal is not an option. At the end of the year, he must get the battery changed – what he likes to call his 10,000 mile tune-up.