Six medical professionals sat in a semi-circle on the left side of Rick’s hospital bed. I sat slightly to his right, just within his peripheral vision, now compromised by a mild stroke last November.
Although specifically requested to be there, I hadn’t wanted to go to this meeting. I couldn’t imagine it being good news, and had dragged my heels. The sick feeling in my stomach worked its way into my throat as everyone sat down.
Dr. Gelow, one of Rick’s three heart failure specialists, led the meeting, posted on the white board above the sink as a “Care Conference.” She spoke softly, first apologizing for the fact that she, too, gets emotional in meetings such as these.
Nevertheless, in just a few sentences, she honed in on the point. “The right side of your heart is just too damaged. We can’t fix it. There’s really nothing more we can do.”
I exchanged a long, meaningful look with Rick. We sat without moving, just looking at each other, both of us with tears in our eyes. Dr. G. and the team waited patiently for one of us to say something, so I managed to choke out, “Where do we go from here?”
“I’d like to see some of the sparkle come back into your eyes,” Dr. G. said to Rick. “All this poking and prodding isn’t doing you any good. I’d like to cut back on the number of times each shift we take your vitals, and I think we can lift the fluid and food restrictions and just let you order what you want and enjoy eating it.”
“Quality of life,” I whispered. I hadn’t meant to, but I guess I said it out loud.
Dr. G. nodded. “There are a number of important decisions to make.” She outlined a few of them: DNR orders, breathing tubes, life support. Nausea swept over me and I gave up trying to hold back my tears. Dr. G. concluded by reiterating that Rick had the final say in all medical decisions. “So what do you want?” she asked.
“I want to go home,” said Rick, in a tiny little voice. “I want to spend time with my kids and grandkids.
Dr. G. nodded again. “We can help you get ready to do that.”
But how? I wondered. How can he be sent home when he is too weak to walk, or stand, or transfer from bed to chair without a hoist or other assistance?
I slowly scanned the group. I looked at Lisa, the social worker assigned to Rick’s case last September; Tiffany the palliative care team coordinator; Robin, the cardio nurse; Kim, the nurse on duty, taking notes for the physical therapy team; Helen, the LVAD coordinator; and back to Jill, otherwise known as Dr. Gelow.
Each of them wore an expression of deep compassion. I could feel how much they cared, and was grateful for every one of them.
“We’re going to give you a little privacy,” said Dr. G. “Then Lisa and Tiffany will come back in and answer any questions.”
As soon as they cleared the room, I crawled up on the bed next to Rick, laid my head on his chest, and quietly held him. “I can’t imagine my life without you.”
We had about 20 minutes to discuss the limited options. When the two gals came back in, they guided us through the questions on their forms, and explained point by point what each decision meant. It was brutal, but necessary.
Rick has had Congestive Heart Failure for 16 years. Eighty percent of the men who receive a CHF diagnosis die within the first two years. He’s been the poster boy for long-term survival. But eventually, we both knew it would catch up with him.
At this time, he is “too sick” to be a candidate for a heart transplant. Nevertheless, “that could change,” said another of his heart failure doctors. So Rick is concentrating on doing his physical therapy and maintaining good nutrition.
No one knows what time is left, or what tomorrow will bring. But we will work to make each day count, and every day we’ll focus on the things that make us smile. Rick and I have had some amazing adventures the past five years. Here’s hoping there’s time to make many more wonderful memories.