Learning to Live with Cardiomyopathy – Take One

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So we venture into New York City together yesterday. The trip on the Long Island Railroad we usually take for dates is to meet with a cardiomyopathy specialist, Dr. Mark Sherrid. When we reach Penn Station, we follow signs for the subway, and after filing through the turnstile, I hear a train so I race down the steps and yell back to hubby to hurry. “It’s our train!”

 

But he’s still at the top of the steps. The first train rides off, but a second arrives moments later. Hubby steps on and I follow. Then he looks back, reads a sign, and announces that we’re on the wrong train. “This one’s going to Brooklyn!”

 

So I jump off, but the doors close. And hubby’s still on. Well, all of him but his hand. Pulling out my Superhero cape, I quickly reach into that tight opening and attempt to pry the doors open, all the while thinking I’m about to say goodbye. We’ll be separated and have to find a way to meet back up.
But the doors open and hubby jumps off. Only to realize that that was the correct train, and we panicked for nothing. But man did we have a good laugh. Laughed so hard at the drama and the whole scenario, especially my ridiculous attempt to rescue him.

 

When we arrive at the doctor’s office after a much needed coffee run, a very bright NP spends a long time with us, going over hubby’s history and how his diagnosis was discovered, and then we move to an examining room. This is the first time I watch hubby get an EKG on his heart. Poor guy has to get a couple new patches on his chest shaved. And as I watch him lay there with his eyes closed while the machine pitches out his rhythm, I fall in love again.

 

And when the EKG nurse leaves, hubby steps off the table and holds up a random sign laying on the desk, and says, “Time for a selfie?” I shake my head no, tickled that he still finds a way to make me laugh even here. In this moment when we both knew this is serious.

 

When the doc comes in, he chats for a bit, and then begins to examine hubby, and when hubby sits up, the doc says, “Archery. You should consider taking up archery. Think you’d be good at it.”

We all laugh. “I’ve always liked Legolas from Lord of the Rings. Sure. I could try it,” Hubby says.

 

But all I can think is I know why the cardiologist said it. Archery doesn’t require running fast. It won’t make Hubby’s heart beat too fast. Or work too hard.

 

When hubby asks him a question about athletic heart, the doc begins to listen to hubby’s heart with a stethoscope. “Shhhhh,” the doc answers, and I see Hubby’s face.
His raised eyebrows say, “Did I just get shushed?”

 

And I smile back. Yep. My baby just got shushed.

 

After a few more questions about hubby’s history, we move to the doctor’s office and take a look at the Echo and MRI images, and I feel like I’m in a med school lab. I have never understood what is what on the screen until the cardiologist points to the chambers and then zeroes in on the septum. “See here.” Then he takes a virtual ruler and measures the thickness. “It’s close to 18 mm.”

 

And the number is only a couple of a millimeters worse than what we originally thought. But when you’re talking the area inside of your heart, every millimeter of extra muscle is that much less space for blood to flow through. The larger number feels like a punch in the gut for me. I want him to change it. But then he measures the same area on the MRI images and the numbers are similar, and everything hits me harder than the first time. Maybe because now it isn’t just a number on a paper, but right there in front of my eyes is hubby’s heart. Beating. Pumping. Hurting. Broken.

 

Dr. Sherrid then begins to talk about what Hubby’s next steps are. How he should exercise in moderation. But no more competitive sports. No more biking up hill. No more push-ups or pull ups. In fact, no more lifting any weights over fifty pounds. Sarah-Bear, our youngest, is close to forty pounds. Grateful for the last fourteen years when hubby carried each of our girls. Some days all four at once.

 

Aware that those days are over, I try to focus on what hubby can do. He can still bike. On flat paths. He can still kayak. On quiet waters. He can still do a lot. I am so thankful for all this. I nod as the doctor talks about how important it is for hubby to realize that he will now work out to stay fit, not to make his heart better. He can’t make his heart better. But he can hopefully help his heart not to get worse.

 

One glance is all it takes. A tear. Then two slip down hubby’s cheek. And I can’t keep looking at him, because now I’m tearing up too. Fighting to gain my composure, I ask the doctor, “How often should he follow-up?” and Dr. Sherrid, his eyes downcast, says, “Once a year.”

 

And as we rise from our chairs, the doc says, “Just remember. No one leaves this life unscathed. We all have to go through something. Keep your perspective.”

 

Dr. Sherrid was warm. Funny. Wise. And spoke with the authority that his years of experience gave him. And we both walk out of there knowing he’s right. We are one of the lucky ones. We found out about hubby’s condition while his heart still beats. We know what it means to count our blessings. We hold on tightly to the one who blesses. Who gives and takes away.

 

And as we walk back to Columbus Circle, I thank God again for being so real during a time when I need to know for sure. And as we ride back on the train I tell hubby, “Man, God sure does love you.” And then I correct myself. “Actually, it’s all about me. It always has been since I’m God’s favorite. The mess of a mess that I am, God just knew I’d be such a worse mess without you.”

 

Hubby laughs.

 

“So a little longer?” I ask.
He nods.

 

Thank you God for a little longer. Thank you.

 

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6 thoughts on “Learning to Live with Cardiomyopathy – Take One

  1. Raj- So glad to encounter a family like yours, there are so many fine adjectives that come to mind when I see the six of any or all of your faces.I love the passion for a good wholesome life that you possess. I am so impressed by your husband’s bicycling and so I decided to ask him tonight about his endeavor across the country….then he told me, so not what I expected to hear! Your humor about visit to city was great! I also got dealt with a surprise last year and had braIn surgery.I wish you the best!

  2. Thank you for sharing this with me , Raj. Our heavenly father is the best physician. He is our Savior. God bless you and your precious family.

  3. You are such a talented writer. Thank you for sharing. It’s true that there’s a lot to be thankful for here. ( I wish I was a fly on that subway when you pulled him off right subway! You guys are funny).

  4. Wow–I was so captured by what you wrote. I am so sorry that the two of you are going through this tough time but your love for each other clearly comes through. Life will normalize again. God bless the Paulus family!