He was in the pediatric emergency room when I found him. It wasn’t my son, but my husband, on a gurney in a robe, hooked up to machines.
Weeks earlier he’d been complaining of stomach bloat, like any woman. He’d stand in our living room and twist, as if he were twirling an invisible hula hoop ’round his midsection. “I can hear it swishing,” he’d said. After attempting a 7-day food fast without any signs of hunger, he wondered if something could be wrong. Tests revealed he was in “complete heart failure,” a term we’d never heard.
“Complete heart block,” sure. We’d been around that block years ago, in 2008, when doctors inserted a pacemaker. His ejection fraction plummeted to 13%, and the pacemaker was replaced with an internal defibrillator with a bi-ventricle lead. He was cardioverted several times (aka, shocked with the chest paddles) hoping to get him into sinus rhythm. He had an ablation. All attempts to get him out of atrial fibrillation. We’ve done this. Old news. But this July, 2019, we’re dealing with cardiac ascites, where an excess of fluid builds up in the abdomen and around the heart. Why? A weakening heart.
The fix: sodium restriction and diuretics. The key: not too wet, not too dry. In trying to find that balance, Phil got too dry. His potassium levels were through the roof. He needed several medical cocktails to bring down his K. A few weeks ago he went into kidney failure. He was taking prescription diuretics and didn’t have to pee. His kidneys stopped functioning. He was rushed to the hospital, the only available bed in the pediatric ER, where I found him.
Today, I’m writing this from the Au Bon Pain hospital garden, with Phil upstairs having a cardioMEMS device implanted into one side of his heart. The device measures changes in pulmonary artery pressure, which are a surrogate measure for fluid retention in the lungs due to worsening heart failure conditions. The system will allow Phil to transmit pulmonary artery pressure data from his pillow to his doctors, who then manage appropriate medication changes to reduce the likelihood of hospitalization and improve survival.
This is all the clinical, the transactions. The emotions have been bloated and heavy, red and angry. It hasn’t been pretty at our house. Scared as hell. Terrified. He doesn’t say as much, but you know. When the doctor mentioned the possibility of a heart transplant, Phil wouldn’t listen. I’ve never seen him as scared as when he said it to me. So of course, things have been stressful. But, he’s in good hands today. And mine are about to be clasped together, asking that the universe align for smooth sailing ahead.
UPDATE: I just got a call from the nurses. Once they were in there, the doctor felt there was a need to check out the other side of his heart. This happens every time they’re inside the man. They always find something else that needs fixing. This actually pleases me. One less thing for me to worry about. Now they’ll get both sides of his heart, just like I do.
UPDATE 2: All went smoothly, and he’s now home. He was told not to lift anything heavier than 10 lbs. for the next two weeks, so I told him masturbation is out. Thanks for all the messages and prayers. It always feels good to know your community has your back!