Tuesday, February 18, 2014

The hole in my heart

A new malady has joined the ranks of things that I will be managing in our house. I found myself in the ER on Friday night with some mild symptoms - lightheaded, short of breath, fluttery heart. After two days and a bunch of tests it was determined that I had a mini-stroke caused by a hole that was discovered in my heart. This type of congenital heart defect, called a PFO, isn't uncommon. Everyone is born with this hole, but most close shortly after birth. For the 25% of people whose don't, most don't have any problem. I, however, am lucky enough to also have an arrhythmia, which creates a somewhat significant stroke risk. After 3 days in the hospital, I was sent home on a bunch of new medication with really no restrictions and told to follow up with a cardiologist. I have an appointment scheduled for next week. While I am very outspoken and opinionated on most things related to Drew's health, I have found myself a bit lost in this new world of cardiology. I will tell you everything that I know about my heart.

  1. I have a heart

When I met with a cardiologist while I was in the hospital, I found myself wowed by his knowledge and simply "taking doctors orders". He told me that we needed to get a better record of my arrhythmia so they would implant a device in my chest called a loop recorder to track my heart rhythms ongoing. At the same time, they would do some sort of internal echo where I swallow an ultrasound wand and they take a closer look at my heart and measure the size of the hole to determine how concerning it should be and what we need to do to treat it. My understanding is that if there is a significant arrhythmia, we will need to address that prior to addressing the hole, because if we do close the hole there will be no way to get to the side of the heart to fix the arrhythmia. I'm sure anyone from the heart community reading this is cringing at my lack of knowledge on the subject and the probable inaccuracy of what I'm saying. I think that's probably the part that's most terrifying; not that I have the problem (it's actually a really good thing that they found it and sounds relatively straightforward to fix it), but rather that I understand so little about it and feel so helpless, asking questions about stuff I don't know, putting my trust in doctors who I don't know. I don't know if I have a good doctor or a bad doctor, and I don't know how to tell the difference. Is there a protocol for dealing with this sort of thing? How do I find a good center and someone who I can trust?

This adult world of medicine is new to me. These doctors aren't accustomed to answering all of my questions and exploring all of the alternative options that I want to check out and I don't like that. They don't appreciate that I have knowledge and skills and that I've been searching online and scouring social media for any and all options - a 50yr old proven effective fix and a 2yr old new, novel approach - I need to know all the options. I like being in control, and when it comes to my life and my health I deserve to be in control.

I've used most connections that I have in the healthcare world to figure out where I should and shouldn't go, and how I can figure out who will be the best doctor for me to see. I've gotten input from 4 cardiologist, directly and indirectly, in the past two days since being discharged, and the fact that they are all seeming to agree with one another leads me to believe that there is a somewhat straightforward path for dealing with this (protocol vs preference). I have some appointments next week to meet some of these doctors and will figure out who I'm best suited to partner with. Until then, I will continue to take my new meds and keep on keepin' on.

Tomorrow I am off to DC and then to NY to make sure that the patient/caregiver perspective is heard and appreciated in all aspects of clinical care. Maybe I can focus in and grab some tips to apply to my new situation!

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