Crazy Heart Mama

Colman is headed to he cath lab in the morning for a heart cath and he should be first case. His team hasn’t gotten a full report from the Cardiac MRI, but they do know that the function of his heart is not what they thought it was. His right heart is showing decreased function. The tricuspid valve leak has been classified as severe for a while now, and I was told today that they think 80 percent of his blood is backflowing through that valve. This is not good news, but it is in the sense that we have some answers and some data to work with moving forward.

Colman also completed a six-minute walk test today. The instructions for the six-minute walk were to walk as fast as you can, but if you get tired, you can stop. So Colman took off walking fast with the physical therapist struggling to keep up, carrying his portable pulse ox monitor. He walked for two minutes, and she said, “Do you need to stop?”

And Colman said, “Nope.”

And she said, “Stop. We need to stop for a minute.”

He was hauling ass down that hallway with oxygen saturations at 63 percent.

She asked him, “Do you feel dizzy?’

“Nope.”

Then she asked, “Do you feel lightheaded?”

“Nope, I’m okay. Just feel a little tired.”

And then he walked the rest of the test. Because that kid is walking around feeling so dadgum crappy all the time, his body doesn’t even let him know that what he’s feeling isn’t right. And he’s stubborn, too. He won’t say, “Uncle.” He’ll just keep going.

So needless to say, the data was very concerning, which is why Colman is headed to the cath lab tomorrow. His team thinks that he may have one or more large collateral blood vessels that could be shunting blood away from the heart causing his oxygen saturations to drop. So the interventional cardiologist is going to go in and hunt for these large vessels and see if he can coil them and close them off. Even if they find the collaterals that are causing the oxygen problems, they may not be able to coil them and get rid of them because doing so could raise the pulmonary pressures and then that could cause major problems with his heart AND lungs.

And when I say “hunt,” it’s going to be a hunt because Colman has thousands of collateral vessels growing out of his heart, bypassing everything to try to get oxygenated blood directly to his lungs. A good friend of mine 3D printed Colman’s heart for fun, and it looked like a freaking chia pet. (It was super cool.)

The cath tomorrow, if successful, will help Colman feel better for the time being. There’s nothing they can do about the tricuspid valve regurgitation or the diminished function. Those issues will have to be addressed later. However, they will be doing full diagnostics again like they did this past March to make sure his pressures are still okay. They are also going to tissue type and match to see where we are as far as antibodies in case we’re left with our last resort…a heart transplant.

Last time Colman was worked up for transplant, his antibodies were really bad. I think the doctor’s words were, “They really couldn’t be much worse.” And having high antibodies makes it very difficult to find a heart your body won’t reject. I think he was sensitized to 60 percent of the population for immediate rejection and he was sensitized to 98 percent of the population for long-term rejection.

So we have no long-term solutions yet, but we have a short-term plan to hopefully help Colman feel better.

So the major goal tomorrow is to find the collaterals that are causing the issue and coil them without raising Colman’s pressures and doing more damage to his heart.

Today was a long day, but Colman is finally feeling better. They raised his IV Lasix dose and doubled the amount of spironolactone he’s taking and it seems to be working a little better tonight. If his weight goes down tomorrow morning, that’s one day closer to home.