One minute you’re asking for folks to get back on task so you can end a meeting on time, for once, the next you feel the oxygen drain from your head, and reeling you collapse.
When you recover, you feel a cold towel on your neck, you hear the buzz around you as they decide whether or not they should call an ambulance, whether they can access the nurse’s office and find a blood pressure cuff (yes, but only part of the machine), they can’t find a pulse, but you’re alive, you move your left hand fingers to your right wrist and find the pulse, it’s hard to find, but it’s there, and it’s fast, really fast for someone for someone who is sitting down.
What do you do?
If you don’t have a heart condition already, you might put it down to the lack of sleep for the past week, the cold your children just gave you, but if you’ve just been talking about getting an AED for your child’s school using PTA monies (multiple children at the school including mine at increased risk of sudden cardiac arrest due to genetic heart conditions) you’d be forgiven for thinking driving home is not the best idea.
Like many women I am prone to dismiss the signs of illness, to tough it out and not be wimpy. This time though, in front of a room full of people I couldn’t, plus this time I had collapsed, I was sweaty, shaking and my heart was racing. A friend took me to the nearby hospital where my specialists are located and I spent several days, mostly waiting to see a cardiologist or an electrophysiologist who I never did get to see.
Much to the embarrassment of the ER doctor, the electrophysiologists eluded them, out-of-town and deeming my case (no firing of my ICD) not worth a visit. The short ventricular tachycardia episode that happened at exactly the same time as I collapsed was described as not being related to one another by one EP, who never actually talked to me, the pacemaker nurse, or the ER doc. So I languished in the ‘not quite admitted, but still in the Emergency department’ for 44 hours.
When I finally left, the internal medicine guy said that the electrophysiologist (who wouldn’t see me) wanted to change my medication, and I should follow-up with the EP in two weeks. The doc had been sure earlier that the EP would come, that they might sit with me and see how multiple PVCs plus pulsing of the pacemaker was still making me observably dizzy, that they would realized that the unlikeness of a time stamped vtach episode at exactly the same time as an observed collapse being unrelated were small, but he was wrong. I was sent out with no answers as to why I had collapsed; why I was having Vtach episodes suddenly; why I was continuing to have small dizzy spells, or what I should do to stop it.
As I got ready to leave, I asked a unit staff member if it was normal to be kept like this, to never see the cardio team. No, they said. It’s not. They, like the ER doctor, were apologetic. She took my blood pressure which was 186/91 much higher than my normal 110/70. Then she circled the patient care manager’s name and number on the board and giving me a knowing look said something along the lines of ‘feedback from patients is really important. The Patient Care Manager and that department is there for this reason.’ I know they had already contacted my patient care manager.
What have I done?
I have changed electrophysiologists.
I’m done with having to beg and plead for an Echo and a measurement of my ejection fraction every few years and being made to feel as though I’m wasting his time.
I’m done with being put on a prescription that keeps my heart rate regular only to have the prescribing doctor ignore the pharmacy’s request for refills for weeks.
I’m done, watching my primary care physician shake his head as he asks if the EP is watching the impact on my liver of one of the EP prescribed meds, and taking care of the blood work and sending him the results.
I’m still angry that for years I asked, from before I got pregnant and subsequently, if there were more gene mutations that I could be screened for and was told no when at some point there was.
I’m irritated at his dismissal of the research coming out of Johns Hopkins regarding exercise limitations and suggesting that”stop when you’re coughing up a lung or puking” is okay for people with ARVD.
He and his colleague have finally eroded the last of my trust I had with this visit, the excuses I made for them, and while this might not have been an ICD firing event, it is a change in my heart’s behavior and that worries me rightly.
The new EP I saw the following day explained that it was unusual for someone to have syncope with a short Vtach, but did not question whether or not it had actually happened. They said it to my face, and said let’s try another medication. When I asked about the Hopkins’ exercise limitations, they said they hadn’t heard of that, but went to the computer and looked up reports and discussed them with me, still questioning if that was what it meant I should do, but willing to talk, to admit he wasn’t sure, to look something up, and to address my concerns.
I recognize how lucky I’ve been to survive a Sudden Cardiac Arrest, to have access to good health care, to not have significant reduction in function, but that doesn’t mean I should go meekly and allow my health to deteriorate due to neglect. These doctors are geniuses without a doubt, but they are human, they have egos, and lives, interests and priorities other than my particular health care. It is my job as a patient to understand that it is okay for a doctor to have faults, but not to accept a doctor who continually ignores or dismisses my situation however minor it may seem to them. It is, after all, my life in their hands. And yes, I’ll be following up with the hospital.