If you’re reading this, you probably already know a bit about my mother’s circumstances. Even so, I feel like I need to write about it in here at least a little bit, just so it’s all on the record.
If you knew my mother prior to this past October, you knew her as an energetic, healthy person. You probably also knew her as the morning show co-host and news director on WDRC-FM, a job she proudly held for over ten years. She would get up at three in the morning, then come home at noon to be a mom for the rest of the day. I’m the sort of person who’s much more content to sleep in, so I could never imagine doing all that. She wouldn’t have lived any other way, though.
On October 14, 2006, she was out shopping when she felt some chest pains. She had no history of heart problems, but she was very aware of the symptoms from her work with the American Heart Association. She came home, and when the symptoms persisted, my father took her to St. Francis Hospital in Hartford.
I was working at the video store that night, when I got the call she was being examined for chest pains. My father told me not to worry, that whatever the problem was, it didn’t seem to be too serious. The next morning, I got another call telling me to come to the hospital as quickly as possible.
She had a heart attack while she was in the ER that evening, though it didn’t seem like a big one. A cardiac catheterization was scheduled for the following day, to scope out the damage and see if a simple stent could fix it. The catheterization revealed a blockage in a small artery, which should not have been too difficult to take care of. But somehow, during the procedure, something horrible happened.
The major artery to the left side of my mother’s heart bisected while the doctor was performing the catheterization. I don’t know if this was somehow the fault of the doctor, if there was some kind of weakness in the artery already that no one could have foreseen, or if there was some other factor involved I haven’t even considered. All that remains open to investigation. The important thing is that people don’t generally survive that sort of event — there is immediately massive internal bleeding and the heart stops receiving blood.
She was rushed into open heart surgery and the artery was repaired, but by this time her heart hadn’t been getting blood for somewhere from 20 to 40 minutes. Doctors couldn’t get it started again — it was essentially dead. They decided they needed to hook her up to a ventricular assist device, a machine that would connect directly to her arteries and take over the pump function for the left side of her heart. This operation was successful, but the obstacle of clearing her chest of blood and fluids while all her other organs were failing from the trauma was a big one. After she was on the left ventricular assist device (LVAD) for about a day, it became clear that her right heart was failing from being overworked. Another open heart surgery switched her to a biventricular assist device (BiVAD).
Things looked very grim about 12 hours later — pretty much as grim as it gets. My mother, swollen and unrecognizable, connected to dozens of humming medical contraptions, lay with her chest still open in intensive care. Her lungs were filled with fluid and not getting nearly enough oxygen for survival. A priest gave her the Last Rites, and my father, sister, and I said goodbye to her. It was an indescribably excruciating moment.
Shortly afterward, a doctor remembered an old oscillator which was literally in the hospital’s basement. He couldn’t think of a more powerful engine in the whole place, so he brought that up in a last ditch effort to save her lungs. It turned out to be powerful enough — her oxygen levels rose dramatically, and thanks to the shape she was in when all this occurred, all her vital organs rebounded (except, of course, her heart). She was still about as critical as you can get, but she wasn’t dead.
The device her heart was on was short-term — it could only last about a week. There were other kinds of VADs that a patient could live on for a year or more, but if she was to survive long-term, a heart transplant would eventually be necessary. This meant transporting her to Massachusetts General Hospital in Boston, with her chest open and in a medically induced coma. After a couple of days, a kind of super-ambulance took her up.
Dr. MacGillivray took her case at MGH, and his reputation makes him out to be pretty much the best cardiac surgeon you can get anywhere. He was still hopeful from the reports he had received that her heart might recover, but his mind changed when he performed the surgery (open heart #3 in the span of a week) to move her over to the long-term BiVAD. As soon as she could be stitched up and regain consciousness, she would start on the path toward getting on the transplant list.
It was nearly a month after the heart attack that she finally woke up, with thankfully no brain damage. It was as rough a situation as anyone could find themselves in — with no memory of anything that had happened, suddenly her health and her life as she knew it were gone. She was determined to get out of that hospital, though, and learned very quickly to live with the VAD as a part of her life.
Rehabilitation was steady — she had lost a ton of muscle being comatose for weeks, and it was difficult for her to eat anything with two chunks of metal sitting in her chest pumping her blood — and psychologically coming to terms with needing a new heart was very difficult. She was able to come home for Christmas, though, making her the first patient ever discharged from Mass General with a BiVAD as a bridge to a transplant. Her progress was pretty incredible, all things considered.
She was home for a while, with home health aides and nurses coming by every couple of days to make sure things were going okay. A couple weeks ago, though, it became apparent that her blood cells were being shredded — a risk of being on a BiVAD. She had to go back up to the hospital for some transfusions, while they tried to figure out if it was safe to switch her back to just the LVAD (the risks with that device are substantially lower). The consensus seems to be yes, that needs to be done.
Last week she had a stroke in the hospital — another risk of having your blood artificially pumped. It seemed only to affect her vision, and she is recovering from that much more quickly than anyone expected. Until they are sure that’s taken care of, they cannot perform the LVAD surgery, but it looks like that might be able to happen within the next month if everything keeps going well.
She is at the top of the heart transplant list in the region because of her circumstances, but high levels of antibodies make it hard to find a good match. We’re all hoping that, once she’s healthy enough again, she gets the right heart and can get off these machines for good. Until that happens, we just have to do the best we can with the technology that’s available.
This is where things stand right now.