Scanxiety and Other Sorts of Horrors

Scanxiety: It’s not just for cancer patients these days. With Loeys-Dietz, I have signed up for a life-long subscription of looking for little ticking time bombs. Is this the year I will have a brain aneurysm? Does that blood in my urine mean a renal aneurysm? Is heart surgery in my near future?

This condition and I are going to have so… much… fun…

But whatever, I’ve survived this year’s scanxiety. All of my MRAs (Magnetic Resonance Angiograms – not even the doctors know the difference!!) were normal. I’m so relieved! I’m going to go ahead and take this as a free pass to ignore any sudden sharp pains for a while. I’m pretty sure now that they’re not a sign that I’m going to die.

I still hate echocardiograms though. And this one was not an exception. While my MRAs were normal, the echocardiogram showed that my mitral valve is starting to get leaky. This isn’t really surprising with a connective tissue disease, but it’s certainly not a “yay!” moment. For now it’s fine though, just something to keep an eye on in the future.

The thing that is really annoying and troubling is that my echocardiograms tend to show elevated pulmonary arterial pressures. The very first time this happened, I had to get a cardiac catheterization test to get a more accurate measurement of the pressures. Thankfully that was normal, but the test itself had so many complications that it wasn’t funny. A twenty minute test took two hours and resulted in a puddle of my own blood on the floor. Fun. With the echos though I always worry that the pressures are something that will slowly get worse until it is a real problem.

After the first echocardiogram, I started beta-blockers and was able to get my heart-rate under control. Because of this, my second echo showed much lower pressures. With this third one though, the pulmonary pressures have gone back up to nearly where they were before I was on any medication. And this is even after having gone up in dosage. I have an uneasy feeling that another catheterization test is in my future. But at least I hopefully won’t have to worry about it for another year. I just need to avoid getting anymore echos between now and then.

So that’s the impassive and straight-forward explanation of how the tests went. But I’ve been really struggling lately. I feel so broken and dejected. Currently I have people lining up to get away from me and I’ve just stopped caring. I was recently yelled at for pushing someone away, and the ironic thing is I really wasn’t then… I am now. I’ve completely given up.

It took me so long to write this update because I don’t know how to share how much I have truly been struggling and I didn’t know how to just ignore it and write a fake response.

Along with the scanxiety, and getting through them, I’ve been having some insane GI issues and have dropped 5 pounds. I have never had such constant intense nausea. Even the last time when I lost so much weight, the nausea wasn’t nearly as bad and I could at least eat. This was definitely not the case this time around. My mornings consisted of huddling in the shower curled up in a ball crying, hoping that the nausea would lighten up enough so I could fake it better and go on with my day. I had also inadvertently went on a liquid diet without even realizing it. I survived on Ensure and soup… at least, whatever soup I could stomach before giving up an hour later (I flushed half a bowl of cereal down the toilet…).

And that’s just my health.

PhD school is… hard.

And one of my closest friends trying to get himself killed didn’t help either. And my other friends? I swear I’m just an exit sign to them anymore. Step on over here and I’ll show you the way to leave.

I feel like I have no heart to give right now. I’m just trying to get comfortable with being dead inside because maybe then the pain will hurt a little less.

I think I’m getting better at it. I wrote that last line without crying…

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2 thoughts on “Scanxiety and Other Sorts of Horrors

    • I borrowed it from cancer patients. I’m not sure if any of the vascular CTDs have used it yet. I know you’ve really been struggling too… I really hope it gets easier for both of us soon.

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