We were finally moved to another floor; new room with a shower, a pretty view, and even a closet! It’s the little things. The nurses scrounged up a cart for all of our things as we had collected quite a bit. Andy was pushed in a wheelchair, I carried some extra things that wouldn’t fit on the cart, and our sweet nurse, Dawn, carried our Christmas tree. I’m sure we all looked ridiculous. We settled in, wondering how much longer we would be there, still waiting on the biopsy results.
Andy’s doctors determined that regardless of the biopsy results he should have a defibrillator (ICD) put in, based on his heart rate still going up from time to time. This device is would be surgically implanted with a lead that would screw directly into his heart. If his heart rate got dangerously high, it would try to pace him down. If that didn’t work, then it would shock his heart into a normal rhythm. This would keep him safe when it was time for him to go home. “Some people who have this device have never gotten shocked from it. It’s basically an insurance policy,” explained the cardiologist who would be performing the procedure.
The biopsy results finally came back and they were inconclusive, which was disappointing. One of the spots that they biopsied showed slight inflammation, but not enough to determine a diagnosis. Since Andy’s heart seemed to be responding well to the medication, he would be discharged after getting the ICD, and a PET scan. This meant that we would go home with no answers as to what was causing his heart to do this. At least we would have the safety of the ICD.
The procedure went well and Andy had a new, gnarly scar to show off. He had to keep his arm in a sling and deal with post op pain, but this new ICD would be with him forever, and just less than two weeks later would save his life. Once the pain from the ICD surgery faded, Andy just wanted to go home; we both did.
A PET scan was scheduled for December 23rd and after that, we were told Andy would be discharged, just in time for Christmas, ten days after being admitted. The PET scan requires a special, strict diet for the scan to show what it needs to show. Somewhere in the communication we missed the info that cheese is a big no, which screwed things up. They couldn’t do the full scan, but only a portion of it. They would have to do the other portion after the New Year on January 3rd. This was annoying, but didn’t change his discharge process, so he had the part of the scan done that he could and we started packing up to hit the road.
Walking into our house never felt so good. The house was clean and a meal was made by my in-laws. We sat, all together as a family, ate, talked, and gave thanks for being home. There were still some last minute things to do before Christmas; but we were more grateful than ever this season. Our house was full of family, food, and lots of laughter in the midst of uncertainty.
After Christmas was over, as I went back to work and we tried to resume some sort of normal life, we almost forgot that we still had no idea why Andy’s heart had chosen to cause the trouble it was causing. Andy was feeling better and better each day, taking short walks and resting when he needed to. My brother and his family were with us until after the New Year, so they were able to help while I was at work. Things felt like they were going to be okay and life was manageable.
Andy was careful to adhere to the diet for 24 hours before the PET scan scheduled for January 3rd, not wanting to mess anything up. As we went to bed that night, I carefully put my hand on the fresh scar over Andy’s heart.
“I’m really thankful for this device. I know it probably feels weird and you’ve been through so much, but I’m just grateful for technology that allows you to have this. It’s pretty amazing,” I said as we both drifted off to sleep.
Around 1:15am I heard Andy get out of bed and walk to the bathroom. He came back to bed and didn’t say anything as he lay back down. I was falling back to sleep when he jumped up to a sitting position and yelled in a way I’ve never heard before.
“Oh my gosh! I got shocked, I just got shocked!” He repeated over and over; shaking and terrified.
I shot out of bed, turned on the lights and looked at him. I started asking him questions and tried my best to comfort him. What do you say to someone who just received a life-saving shock, that felt like a bomb went off in his chest? We carefully read over the instructions of what we were supposed to do. Andy somehow managed to calm himself down. I listened as he spoke to the on-call doctor describing how he felt, which was not good. He described his skin tingling with a burning sensation, his jaw hurt from clenching his teeth, and his chest ached. But all that he was feeling was normal to feel after a shock to the heart, according to the on-call doctor.
I still don’t know how he did it, but he actually managed to fall back asleep a few hours later. Since his heart rate had gone back to normal and he was already scheduled for the scan the next morning, he was told it was okay to stay home. But if he got shocked again, then he should head straight to the ER. I did not sleep. I was still shaken from it. I couldn’t keep my mind from worrying. I was on alert at every sound and every move Andy made. I wondered what this shock meant and what it would mean for the future.
Andy’s cardiologist called him first thing the next morning to see how he was doing. She wanted to see him before his scan. The amount of compassion and concern the doctors and nurses showed, not only for Andy, but for me was incredible. They asked questions and then listened intently as Andy told them what he had been through the night before. Then they turned to me and asked me how I was doing.
After much discussion and reading the telemetry and activity from Andy’s ICD during the middle of the night, it showed that his heart rate had gone up above 185, twice, and his device paced him out of it. But when his heart rate shot up to 250 beats per minute, it shocked him, keeping him from going into cardiac arrest.
“The device did exactly what it was supposed to do. It saved your life last night,” Dr. Robinson said. “I’m clearing my schedule tomorrow to do the ablation procedure. No matter what the cause of this is, we need to do our best to stop it from happening. And I know you don’t want to experience another shock. We want your heart to be in a stable place while we continue to work to find out what’s causing this.”
Andy had the PET scan done after seeing the doctor. He was well-medicated since his nerves were obviously on edge. The scan went smoothly and I drove Andy home, while being entertained by his unique rendition of Hotel California. He headed straight for the couch and was sleeping in no time. He needed his rest, as we would be heading back to the hospital for a 6am check-in the next morning for the surgery.