For the two and a half years that my pacemaker defibrillator (what I call my “Kicker”) has been implanted, I have felt a constant “beating” in my lower left abdomen. The reason for this is simple: one of the three leads (wires) that go into my heart is close to the nerve that controls your diaphragm. It’s the frenetic nerve and it runs from your brain down to your diaphragm and tells it to move when you breathe. At the very least this has been annoying. Incessant pounding, it looks like there is a little man in my stomach kicking. Whenever I sit down or lie in bed on my back or left side it cannot happen for long since the wire beats beats beats against my body and I can’t take it for very long. I get hiccups often, when I walk fast or run it feels like I am being kicked in my stomach, I haven’t slept on my left side in two and a half years! I thought it was something I had to live with…
That is, until two days ago. It stopped! It’s been fixed and I feel like I have a new life! I have a special doctor called an EP (electrophysiologist) who specializes in the electricity of my heart and maintenance of my pacemaker defibrillator. I finally showed him what was happening and he was shocked that I have been living with this. He asked what took me so long to come in with this problem and this is where it gets frustrating:
Originally I had a different EP doctor, a woman. She was my doc by default because she happened to be there when I found out about this whole mess in the Lenox Hill ER back in 2007. Anyway, this doctor had zero compassion and terrible bedside manner. After my Kicker was implanted I called her a bunch of times explaining that this lead was hitting my stomach and it was super uncomfortable. I was also scared.. it was a totally new sensation and not a fun one. She would make me feel awful for calling, saying things like “this is not an emergency why are you paging me”, “this is how it is, you have to get used to it”, and sometimes not even answering my calls at all. I was so scared and she didn’t make me feel any better. Finally , I went into her office and begged her for help. She “fixed” it at the time (or so I thought)…
Two weeks later I was checked into Columbia Presbyterian hospital with my new team of doctors to evaluate me for a heart transplant. It was a week and a half of intense testing. When a technician from Columbia’s EP department showed up at my bedside, she checked my pacemaker for the first time during that hospitalization. She was confused…. why was my lower left lead turned OFF?! The very reason for my pacemaker is that I must be bi-ventricular paced, meaning that my heart needs help beating in one synchronized motion. Without this lead activated it was as good as nothing! My previous doc who couldn’t be bothered TURNED OFF MY PACEMAKER!! We were shocked. I felt violated, completely discarded and left to basically die by this heartless woman at Lenox Hill all because she didn’t want to be bothered by my phone calls. I immediately switched my care over to the EP team at Columbia where they turned my lead on and I felt better immediately.
From that point on the “kicking” continued but I was way too scared to say something so I lived my life thinking well, this is my life with a pacemaker –that for the rest of my life I would have to deal with this discomfort and white noise in my brain, feeling every single heart beat in my diaphragm.
Which brings me to my EP doctor two days ago where he stood in disbelief that I had been living with this discomfort. He said I deserved a beer (“only one”) for putting up with this for so long. We spent an hour fixing my lead. He worked at it until the sensation in my stomach was gone. I moved in a bunch of different positions to make sure it wasn’t hitting anything. It was AMAZING once it was gone! Even more amazing that he somehow managed to change the angle at which the electrical impulse enters my heart so that it was no longer close to the frenetic nerve. CRAZY. He said if we couldn’t fix it with the machine that surgery was the next option –to go in and fix it. I’m thankful it didn’t get to that point.
I left there a new woman! I felt a mental sigh of relief! I no longer had this “tugging” on a nerve which was clearly making me incredibly uncomfortable day in and day out. For the past two days even sitting down or leaning to my left side is a whole new world!
I speak about being your own advocate all the time here. Yet, I still let this horrible EP doc at Lenox Hill get into my brain and make me feel so tiny that I didn’t mention my discomfort for years. She led me to believe that this was normal, that I was BOTHERING a doctor if I brought it up. She basically traumatized me. Docs like her (the ones that aren’t good at their jobs) do not realize what it’s like to be a terrified patient.
I’m still learning from this experience. I learned another valuable lesson once again — you need to DO YOU. If you are uncomfortable say something regardless. It could be the difference between a comfortable, happy life and one where you struggle every day. Never ever let a doctor make you feel insignificant or ashamed for complaining about discomfort.
Now I’m off to enjoy a day where I am not reminded of every single heartbeat by way of tugging on my stomach! Bliss.
