- 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!