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More Health Stress. I'm Scared! Also, some advice requested

Monday was such a shitty day, and I appreciate the support.

I've given a really long TL;DR explanation of my shitty health problems.


I'm not allowed to drive until late November at the earliest. I was mad at my doctor because I thought he didn't trust me, but it helped convince my job to allow me to work from home. He did it to help. I can deal with that much easier.

So brief summary: I have neurocardiogenic syncope and small fiber myopathy. There's a breakdown in communication between my brain and cardiovascular system, and my body can't regulate my blood pressure, so I faint. I had a pulmonary embolism 10 months ago, so while I've had this condition for years, it only became completely uncontrollable this past year.

Everything causes episodes. Stress, heat, sudden temp change, viruses. I have lung and heart damage from the PE, so that's awesome.

I wore a heart monitor for a month this summer to see if my heart stops before I pass out. It doesn't, nor was the drop in HR significant enough for them to think a pacemaker would benefit me anymore. A pacemaker is the only "cure." They've run out of meds I can take: I take THREE to raise my BP, and at that I'm lucky if the numbers are as high as 100/60. I drink four liters of water a day. I try to eat more salt. I wear compression stockings.


At this last cardiologist appointment, I started crying. This is a frustrating thing to have because it debilitates me at times, but it's an invisible condition unless you see me pass out. Not that I want people to NOTICE, but I also am afraid people think I'm faking. I expressed that to my cardiologist, more out of frustration with people at work, and he assured me that there's no doubt in his mind that this affects my life this way. He said mine is the worst case he's seen in that there's nothing else from the cardiac side that he thinks they can do, and it's so aggressive.

So today, I am having a consult with a doctor who implants heart monitors inside chest cavities. The cardio would like a snapshot that's greater than a month, since I do go from tachycardia to bradycardia so quickly at times. This would be implanted for two years, and then a pacemaker might be an option. (There's also a surgery that could be done from the neuro side, but I need more testing.)


No matter what happens at this appointment, I'll be upset. If I find out that the director doesn't think I'm a good candidate, I will lose my shit. I can't live like this forever. I'll get upset if he wants to go ahead with the surgery, because I don't want surgery! I'm terrified, and I know I'll hear something and panic and not remember to ask questions. Shit, I can't even come up with questions because I'm so upset. My friend is helping me, and I'd like to see if you guys have some suggestions for things I should ask.

Sadly, PollyDude can't bring me, and none of my friends are off work that early, so I will be alone, but the friend who provided me with a pretty long list of questions (some of which I do already know the answers to) suggested I record the consult on my phone.


I'll edit the post with bullet points from suggestions.

  • Is this an inpatient surgery?
  • How long does recovery take? What sort of post-op care will I need?
  • What material(s) is this device made from? (With MRIs in mind, which hopefully is never something I have to worry about)
  • What is the risk of infection?
  • Where and how deep will I be cut? Will anything be re-arranged? (ha.)
  • Will any other body systems be affected?
  • How long is the surgery?
  • What are the potential side-effects from the surgery and also from having the device implanted in the long term?
  • How long would I be off work because of the surgery?
  • Will it leave a scar?
  • How does the device work when it's in?
  • Will I make faxing noises? (hee hee I had to do it)
  • How does my doctor get information from the device?
  • What kind of follow-up do I have with you?
  • How long until I can resume normal activities (exercise, housework, sex, etc.) after the surgery?
  • Is there anything I won't be allowed to do while the device is implanted?
  • How do you get the device out and what kind of recovery is associated with that process?
  • How does the device work?
  • Can I see what the device looks like? (I don't know if that would help you at all. I know that when I got the drain in my head I was SO FREAKING confused about how it worked and it would have been so helpful to actually see what it looked like.)
  • Will I feel anything when it's in there?
  • Will I be on any medications for this after surgery or while the device is in?

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