Marfan Syndrome

Photo by Chloe Epperson Photography

At the beginning of our first date K (the husband) told me he had Marfan’s Syndrome, a genetic heart condition. I wasn’t worried, it wasn’t like I was going to marry this guy. Well, I did marry K, and with him came this heart condition, one that, should we have children, they have a 50/50 chance of getting. Marfan’s is one the reasons K is so tall (he’s 6’10”), and affects his joints, skeletal structure, vision, etc.

Marfan’s has been one of the scariest parts of our marriage for me, and it continues to terrify me. I panic if K doesn’t text me to tell me he made it somewhere. (His dad’s valve has started leaking before, and he passed out while driving, his uncle has dissected, which means his aorta shredded, etc.) Losing K is my biggest fear, he’s my best friend, husband, father to our 4 fur babies, and honestly, just the best person I’ve ever met. In all actuality, I should just calm down. K’s doctor’s say he is doing great, is just as healthy as the next person, and the chance (at this point, since his valve sparing operation) of anything going wrong is as much as a person with no heart condition.

Marfan syndrome (also called Marfan’s syndrome) is a genetic disorder of connective tissue. It has a variable clinical presentation, ranging from mild to severe systemic disease. The most serious manifestations involve defects of the heart valves and aorta, which may lead to early death if not properly managed. The syndrome also may affect the lungs, eyes, dural sac surrounding the spinal cord, the skeleton, and the hard palate. People with Marfan syndrome tend to be unusually tall, with long limbs and long, thin fingers and toes. -Wikipedia

K had a valve sparing operation almost ten years ago, so they wrapped his aorta in something to help it not leak or anything. He goes in for a checkup on his heart annually, and so far everything has looked great every time, but even with that I feel like he has this ticking time bomb in his chest, and when I think about it I immediately tear up and can hardly breathe. He just had his annual checkup this past week, and I was a wreck for a good 2-3 weeks leading up to it.

So far K is healthy and doing great, but it’s always in the back of my head that something might be wrong, or that I could lose him. Then, when I think about us having children, and the reality that there is a 50/50 chance they will have Marfan’s, I’m overcome with fear. I’m still asked quite often when we are going to have kids, and I can only imagine how much more anxiety I’d have being worried about a child with this, or, if we do have children and I’m home raising them, if something happens to K, and suddenly I need to provide for us.  I’d be so behind in my field it would be hard to find a job that paid well enough. I’m worried of K being the one that health insurance is under, in case something happens, and were to lose his job. I’m worried because he can’t get life insurance since having open heart surgery, except through work, so again, if something happened and he lost his job, that would be gone.

Plain and simple, I’m just worried; I’m a worrier. Marfan’s Syndrome is nothing I knew to prepare for, and it is something I am still struggling to cope with, even though I’m not the one that has it. It’s something we rarely talk about, as I always turn into the crying mess, and just think of the worse. That’s one of the reasons for starting this blog, I want to remember us, just in case. I want photos of us all throughout our life, I want to always have something to look back on and remember with, just in case.

This song is one of my favorites, and perfectly describes how I feel about K, well, along with about 100 other love songs. But, it’s true:

There’s never been a love more true, ’cause I was made for lovin’ you.

Photo by Chloe Epperson Photography


Photo by Amber DeHaas Photography



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