Musings of a Marfan Mom

A Dissection Scare

| 15 Comments

Have you ever had one of those days where you just didn’t want to get out of bed? Where something just isn’t sitting right? You know…like that time Meredith was depressed and sure she was going to die that day? And then the bazooka bomb and (really hot) bomb squad guy happened?

(starts at 2:00)

Well that’s how I felt yesterday, only without the adulterous ex-bf and whole explosive thing.

I had this amazing day Saturday, then woke up Sunday morning and did not want to get out of bed and go to church. I couldn’t place a reason why…something just didn’t feel right. Mark had to be at church early to warm-up for the solo he was singing, so I stayed behind to eat and finish getting the Menininho ready. We planned to meet him there before the service started.

Just before heading out the door though, I was hit from nowhere with a tearing pain in my abdomen. I was doubled over and it pulsated…it came and went almost like a heartbeat. I felt a wave of panic. If you have Marfan, you know exactly what I was thinking.

Type B, or descending, aortic dissection.

They’re very uncommon as a first dissection in Marfan patients, meaning that those who get a Type B dissection have almost always had previous aortic work done, usually on the aortic root. But, in pregnancy, the risk of spontaneous descending dissection, even in someone with a good aorta like me, is increased.

From the time we’re diagnosed with Marfan, we’re taught the symptoms of dissection. We keep emergency cards in our wallet for EMTs and physicians. We know the cardinal rule: get thee to an ER.

But I waited. If you’ve ever had a false alarm with a dissection, you know it sucks. And it’s expensive. And it’s scary. So I waited, against my own advice. I wanted to see whether the pain came back and how my blood pressure went and give Mark a chance to finish singing. I emailed my cardiologist to give him a head’s up and checked my BP (thanks to my friend Mike the nurse, who reminded me that I needed to look for a discrepancy between the two arms), which unfortunately had an over 20 point difference between both arms. (A 20+ point difference in either systolic or diastolic is apparently a symptom of dissection.)

I eventually called the clinic and my cardiologist (who is out of town) was paged. Given that the intense pain lasted only about 10 minutes, he was optimistic I hadn’t actually had a dissection, but given my other symptoms/risk factors, he also felt the possibility couldn’t be ignored. So we conferred with my OB and off Mark, M., and I went to the emergency department.

To their credit, they were ready for me. As soon as the nurse asked me about the pain in my “tummy,” I was sent back to the room for very ill people. And my initial ultrasound was done promptly, by an attending. However, my cardiologist and I both knew that the likelihood of my descending aorta showing up on an ultrasound this far along in my pregnancy was slim and that the risks of a CT scan probably weren’t warranted. Unlike other aortic dissections, a Type B isn’t usually treated surgically. Meds and monitoring are increased. When the ultrasound showed a healthy baby and no real view of my descending aorta, I suggested to the attending that she discharge me and I would get an MRI during the week. She wanted to rule out placental abruption first, so we waited for L&D to come downstairs to see me.

While I waited, a cardiac fellow was sent with a portable echo machine. I protested that an echo wouldn’t show any more than the ultrasound I’d already had, to which she agreed. I protested I was having NO symptoms of a dissection in my thoracic aorta, not was there any reason to consider one given my aortic size. She agreed. But, the Powers The Be said I had to have one, so I was forced to have one. Everything looked fine but my descending aorta, which she couldn’t see.

All the meanwhile, no one would approve me to eat. I pointed out I wouldn’t consent to a CT and even if I was having a dissection I wouldn’t be having surgery, so there was no reason to keep me NPO and the doctors nodded and ignored me.

Eventually I was told I had to have a THIRD ultrasound, because the ultrasound tech was the only person who could REALLY see my aorta. Why, I ask you, was I not sent to the tech from the get-go? Why did I have to have the same test 3 times (to be billed by 3 different departments)?

Finally, after 5 hours, I was cleared to leave. L&D was able to rule out placental abruption. What the ultrasound tech could see of my descending aorta looked good, so we’re feeling pretty confident there is no dissection, but I’ll be seeing my doctor in about a week to check everything over again to be sure.

I’m very grateful to everyone who was so meticulous in my care today. It does remind me though, of how I hate not being in control of my treatment (which we have to admit, in the ER we really aren’t 100%). It’s difficult to lay in a bed for hours and wait for someone else to decide what tests you’ll be put through, whether you can eat, drink, or go to the bathroom, who can be with you (in my case, no one), and when you can leave.

My lessons of the day:
1) Know the symptoms of dissection inside and out.
2) Don’t wait to go to the ER if you think you’re having one.
3) Don’t be afraid to speak up: You know yourself best.

And Smudge? Seriously…stay put till at least 38 weeks, please!

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15 Comments

  1. Glad that after all that, things look ok. Had to be scary, even knowing a lot about what to expect!

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  2. I’m glad it was nothing and that everyone was ready for you! And yes, Smudge, stay in!

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  3. You scared me, girlfriend! Your comments about NPO and how there was no reason for it, reminds me of my in patient experience last fall to get IV diuretics in order to drain out 45 pounds of excess fluids. When I entered the hospital it was for this purpose only, yet they took me off coumadin and got me started on heparin. WHY!? Routine? standard practice? I spent 10 days peeing out the 45 pounds of water, and then another 7 days as a patient while they fiddled with my coumadin to get my INR back to 3.0. Seven extra days. $$$$$$ And that’s all I did for 7 days, get my blood drawn every 8 hours, a dose of coumadin once a day. I see no reason on earth that I should have been taken off the coumadin for a diuretic treatment. If it happens again, I will put up a LOUD protest! Keep standing up for yourself Maya!

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    marfmom Reply:

    I scared myself! Hospitals need to be flexible with their “standard practices.” The whole time the doctors were apologizing for keeping a pregnant woman without food (or WATER) all day, they could have stepped back and realized there was no reason so continue doing so after they’d ruled out a Type A dissection (of which I was having no symptoms of, anyway)!

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  4. WOW! Never a dull moment! So happy things are looking OK now.

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  5. Whew! So glad you and baby are OK!! As always, your confidence and self-advocacy are inspiring.

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  6. I’m glad you are okay. You must of been so scared. If you need to talk or have any questions about type B dissections, please just email me. Try to take it easy and rest.
    Jen

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    marfmom Reply:

    Oooo yes, you were another person I was thinking of yesterday! I will be dropping you an email soon!

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  7. I’m glad you and Smudge are alright! I’ll certainly be keeping you in my thoughts and prayers. Take care, friend!

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  8. Wow Maya! So glad you are ok. You and are both having quite a week here. Can’t wait to hear from you again when you get a chance to finish your giant email :)

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  9. So glad to hear you are ok. I remember how scared I was when I thought my daughter was dissecting at 29 weeks (turned out to be a pulmonary embolism).

    Please take care & we are praying for you all & maybe we will see you at convention next summer here in Portland?

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    marfmom Reply:

    Yikes! A p/e isn’t much better! I had a CT scan when I was pregnant with M. because they thought I had one; turned out to just be altitude sickness. Were they able to clear your daughter’s out with blood thinners? I will definitely be seeing you in Portland! We’ve already started planning the teen activities :-)

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  10. I am giggling at them asking about your “tummy”. It’s kind of like in pregnancy when they keep referencing your “bottom”.

    Just had to find humor in a scary situation!

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    marfmom Reply:

    Yah part of me laughed too. It must have been a pedes nurse. Finally I said “Um, you mean my abdomen? Yes, it hurts.” But then she said “ok, tummy hurts” and went right back to using it!!!

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  11. Whew, I’m glad things seem to be ok. Scott has had several frustrating experiences with the “Powers that Be” requiring tests when the results wouldn’t change treatment plans either way. It has to be even more frustrating to be on the receiving end!

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