Jenny-How you break a Partymaker....

Monday I was not feeling well. Just a little bit "off" like you feel when you are getting sick. I ate lunch but felt strange and wanted to rest. I was lightheaded. I called my pacemaker clinic and told them I needed to come in right away. I thought the programming had gotten messed up.  Which happens sometimes when you get your pacemaker checked. If the technician clicks on the wrong thing they can change your programming!! So I thought that was what was going on.

I drove myself and Ava to the office. As soon as I stepped out the car I knew I was in serious trouble.  I couldn't talk so I couldn't alert the valet so I decided to try to make it upstairs where I needed to be.  I whispered to Ava to hit the floor button 24 and we were on our way.  I didn't think I'd make it out the elevator.  But I did.  Just barely.  I couldn't see where the office was so I looked around and motioned for Ava to go that direction.  Then whispered at her to open the door.  I knew I was going to faint so I laid on the floor, of an office with about 20 people in it.  20 heart patients and their families.  No one came to my aid.  Ava calmly waited in line behind people registering.  The front desk couldn't see me.  I went unconscious.  Then I woke up and yelled it was my pacemaker and I needed help.  Then Ava told them my name and my information. She yelled at the entire office to read my medic alert bracelet and that I have a pacemaker.  She got me help.

Next thing I knew was my doctor was there.  I asked him to make sure Ava didn't see anymore of this and he promised she was safe.  Then they tried to put me in a wheelchair but I passed out again and slid onto the floor with my leg bent behind me. So a nurse tied me to the wheelchair and they went to check my pacemaker.  I was in robot power down mode. It felt awful. I couldn't hold up my head. Then the paramedics showed up and took me to St. Luke's.

My heart twin April came to visit.  She figured out it was my left side. I couldn't move my neck, head, shoulder or left arm and breathe normallly. I was panting and gasping. It feels like I'm being suffocated.  Once we figured out what it was we called our wonder doc, Dr. Mehdi Razavi on his cell phone and told him we figured out it was the side with the leads and seemed to be the pacemaker. Some docs wouldn't appreciate being told by a patient what was wrong but that's what makes this doc so different. He listens to me.  He doesn't let ego block him from hearing me.

Fast forward a few days I had been trapped in my room for days with a dayglo bracelet on my wrist that says "FALL RISK" they gave me yellow socks too which means I'm not allowed in the hallway. But I knew if I didn't walk we wouldn't figure out what happened so I snuck out.  I changed my clothes so they wouldn't notice me as fast.  I went around the unit 1 lap and then the alarms went off and the nurses were full out running towards me telling me I was about to crash. But I wasn't.  I didn't even feel bad right then.  They said I was in V Tach, which can lead to sudden death. Several docs checked the montiors and confirmed the v tach. Then Dr. Razavi called and said it was the pacemaker. So I snuck out again. The nurse hates me by this point and thinks I am an idiot.  It happens again, they run at me again and make me lay down in the nurses desk.  I'm still not feeling that bad. They tell me my heart rate is 270.  But it wasn't.

So the whole crew shows up. About 7 cardiologists.  They changed some settings on my pacemaker and turn down the voltage.  I turn my head to the left and like magic I can do it.  Then one of the docs tells me I was breathing 150 times in a minute. People normally breathe 20 times in a minute. So it was awful.   The team realized right then what it was.  I moved my lead!! Yes, it was still connected, electricity was going through it. But it was moved so it was now hitting my phrenic nerve.  So every time I moved my shoulder, arm, or head I was hitting this nerve and couldn't breathe.  It was a Eureka moment.  We had an answer after days of not knowing what was wrong. After days of not being able to move at all.

So Dr. Razavi called me. He was amazing as usual.  He's going to operate on Tuesday.   As it turns out my heart is a little more horizontal than most hearts.  Fun fact, Did you know when you bend over slightly the bottom of your heart tips forward?  I didn't know that!  Docs often ask patients to learn forward in an exam. This is exactly why!  So they can listen to your heart better!  So my leads needs to be placed further away from this nerve.  But since my leads are screwed into my heart I may have torn my heart slightly.  We won't know for sure until he gets in there.   So my whole device will be removed, the leads will be in a new location and then we recover for 6 weeks all over again.

It's going to be a long wait until Tuesday because I can't move.  I want to see the kids but the slightly movement is shaking my leads and I can't breathe.  So I'm home but stuck in my room.   I'm so relieved my daughter knew what to do in an emergency situation. Something all our kids really need to practice with.  Make them remember vital information. Practice what to do in an emergency.  It's so important.

So next week Bob Marley and I have a date with the OR.  Then I'm be back to my normal robot self!! I promise to behave this time.  As it turns out you can pull hard enough to break a lead!!!

Jenny