Musings of a Marfan Mom

That Time I Went to the Hospital and Pulled Out My Scope


A few weeks ago, I drove myself to the ER for chest pain. I was admitted for further testing, and discharged the early evening of the 2 days later

The pain started early in the day on a Friday. I had a pressure in my chest, like I needed to burp. I can rarely burp, since I had a nissen fundoplacation as an infant, a surgery that wrapped my stomach around my esophagus to prevent reflux; although I’ve recently developed the ability to burp VERY occasionally (a few times a year), I still can not throw up. I’ve had this feeling occasionally, and it usually goes away. This time it didn’t though. That evening, Mark suggested perhaps I had heartburn and gave me some alka selzer. The discomfort didn’t go away.

The next day, Saturday, the pressure felt worse. I toyed with the idea of going to the ER, but we had a wedding to attend out of state that day and I didn’t want to miss it. Plus, Mark’s parents were going to watch the kids all day for us. What a treat! It hurt to eat, but the pain wasn’t unmanageable.

Sunday Mark left for a meeting before church. The pain was definitely worse. I took a prilosec on the off-chance it would help, but the pain continued to worsen. By the time I was driving the boys to church I was having trouble breathing. I knew I wasn’t having a dissection, but I was worried my esophagus was rupturing. I insisted on driving myself to the ER (I know, I know…but I was in so much pain I wasn’t thinking clearly. I just wanted to make sure someone would teach my children’s Sunday School class, so I told Mark to do it). It briefly crossed my mind that I might be having a heart attack.

I stumbled into the ER and the woman at the desk asked me if I’d been in an accident. I told her I was having chest pain and in less than 2 minutes I was taken back and had a team of 3 nurses working on me to get my history, take my vitals, and get an EKG. The EKG was abnormal and my blood pressure was high. After my history was confirmed by the main doctor, I was giving 4 baby aspirin to chew, and a nitroglycerin tablet. My pain decreased almost immediately, and I was given another nitro tablet about 20 minutes later.

Over the next half hour I was given an x-ray and a CT scan. Blood work to check cardiac enzymes was taken as well. It occurred to me that if I had been having a dissection, taking the aspirin and nitro was probably a really bad idea. I think I feel comfortable with it in my case because I KNEW I wasn’t having a dissection (my aorta is normal and the symptoms didn’t fit), but any Marfs reading this may want to consider how you would handle the situation if it happened to you. When I see my cardiologist later this month I am going to ask what I should do in the future. In the instance of a heart attack, that treatment is exactly right. In a dissection, I’d guess it would make you bleed out faster.

In any case, dissection was ruled out and I was eventually transported to another hospital for further testing.

The next day I met with the cardiac team and we were able to rule out any cardiac cause to my pain. All my enzymes came back normal and I have no risk factors for a heart attack. If I understand correctly, I had ST-Ts on my EKG, which CAN be a sign of a lack of oxygen to part of the heart, but can also just show up if you have, say, pectus excavatum, (which I do). My cardiac nurse practitioner was able to show the hospital staff that the EKG they took matched mine from 4 months ago.

So, what was causing the pain? I met with GI and was taken for an endoscopy. They gave me versed and told me it would put me in “twilight sleep” so that I’d sort of be awake but not remember anything. Only…I was awake and I remembered almost everything. Specifically, I remember ripping out the scope once they tried to start the procedure, and shaking my head when the nurse said I was asleep. Needless to say, they canceled the procedure, haha.

We re-tried the endoscopy the next day. The doctor found multiple ulcers in my esophagus. Luckily, they weren’t bleeding, but they were super painful. We wouldn’t know for a week what caused them, but he gave me pain meds and meds to treat both virus and infection, and sent me home.

Of course with Marfan (or me, at least), things are never so simple….
(To be continued…)

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  1. youch- that’s crazy scary..


  2. I’m just happy that you are fine!!!


  3. I have really awful acid reflux and get gastritis on a regular basis thanks to my Marfan’s tissue so I’ve had a few scopes and I have to tell them as nice and compliant a patient I am conscious I will fight like heck if I’m “relaxed” or in “twilight” sleep. They have to make sure I’m out of it. It’s taken a few incidents like your ripping the scope out for them to learn that. Something about lowering my defenses with meds makes me a massive fighter.If you warn them of that next time they’ll double check that your asleep and/or give you a little more meds. I chalk it up to how many procedures we go thru. Were subconsiously just trying to protect itself.


    marfmom Reply:

    That explanation makes sense to me! And I really hate anything being down my throat anyway! One time I apparently slapped a nurse trying to do a whooping cough test on me (I never realized I did, but Mom told me later). That test involves sticking a swab way up your nose, which is basically the same as down your throat, haha.


  4. Funny, I’ve been known to pull tubes out too. Endoscopes, IVs, Foley Catheters…
    I remember being sedated a little bit for an endoscope (actually a Transesophogeal Echo) and hearing the nurse rather
    calmly say, ” You need to let go or you will break my arm!! Needless to say, they put me completelty under for the rest of it!


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