Jenny...Getting back to the swing of things....

So April (my heart twin) and I set out on a quest about a month ago to figure out how to get programmed in such a way that we could move like normal people. We were both using the rate response function of our pacemakers and had to bounce for 30 seconds so our pacemakers would click on and we'd have enough air to climb a flight of stairs.  So imagine you are at the Aquarium going on a leisurely stroll and encounter two women oddly jumping up and down every time they can't breathe.  It's would have been enough to make us cry on our own but we had each other so we just laughed. It was kinda hilarious. We tried to see if we could start a trend and make somebody else do it (that wasn't a robot) but sadly no one succumbed to peer pressure. Ha Ha. This also caused problems in everyday life like going to the grocery store (reaching for things, bending over, any quick movements at all.) So all of our awake hours were spent trying to figure out a way to do very normal things that people take for granted (like getting off the sofa and breathing at the same time!)

So we both went to our amazing heart surgeon (Dr. Mehdi Razavi) and demonstrated our dilemmas. How you ask?  By running full speed down the hallway at the cardiologist's office. Actually to get technical the Electro-Physiologist  (EP) Cardiologist's office. So we looked like idiots but we didn't care.  He's completely used to my chain cursing and silly behaviors and April's insistence that we can be better than this. We deserve better than this after we went through so many surgeries to get well. Not to be greedy but...We weren't leaving until we found some way to make these devices let us move normally. 

A guy named Foster (who works for the manufacturer) of our pacemakers showed up at the door saying he had an idea but wasn't sure if it would work.  We said Yes before he even told us the idea. He could have said he was going to program us to automatically set off alarms everywhere we went.  We'd have said yes. (This has been my 13 months of saying yes to weirdo experimental surgeries so why stop now right?) So Foster came up with a weird way to program our pacemakers not to be so sensitive to our chests moving (when we are working out.) The caveat is we both use our pacemakers 99% of the time.  So our battery life will be shorter by a few years.  But who cares if we can live like normal people!!! So Foster reprogrammed us both and sent us off to run the building, run stairs, hop up and down, and generally behave like well, idiots.  To put things in perspective 98% of pacemakers are "rate response" which means as people move then their pacemaker "clicks" on.  The problem with rate response is it didn't click on fast enough for us and was effected by everything, even the movement of your chest if you didn't have on a really tight bra.  I couldn't even look over my shoulder without my heart speeding up as fast as it can go.  Any type of movement was awful, causing constant suffocation.

Our problem was the type of rhythm problem April and I have is called a junctional rhythm.  So we suffocate unless the pacemaker is "on." So Foster allowed us something that we didn't think possible. We both can get up from a seated position and breathe.  Doesn't sound like that big a deal right? Well it is if you can't do it.  Especially if you have little kids you need to chase. Little children whose lives depending on you to run and catch them.  I can catch them now! Thanks to Foster for taking the extra time to help us.

I was so sick when I got the pacemaker that I couldn't walk a few feet.  So the idea of moving enough to run, and being able to breathe well enough to ride a bike sounds like an amazing feat.  I've been cleared to workout for the past two weeks  I'm 8 weeks post implant date of my pacemaker "Bob".  Need to work on a better name for him! It's been a very interesting 2 weeks.  Full of things I had not thought about like finding sports bras that work with a pacemaker with padded straps so they don't press into the pacemaker but are tight enough so my pecs cannot move. Because that feels weird and it's uncomfortable and running in the gym while holding your boob is not socially acceptable.  So people who have pacemakers can't usually ride bikes. Why? Because unless their chest is moving the pacemaker doesn't know they are working out and won't increase their oxygen levels.  But we have programmed our way out of that situation.  I almost cried sitting on that bike through an hour long spinning class.  Because I freaking did it.  I did it on the first day I was cleared to workout.  After being in bed for 8 weeks.  Pretty amazing day. 

Which leads me to my next point.  The whole reason I picked biking that day (THE FIRST DAY I HAD WORKED OUT IN 8 WEEKS, IN THE SAME GYM I PASSED OUT IN, 2 MONTHS TO THE DAY) was so I was could test this theory for my new NYC friend who was getting a pacemaker and wanted to be able to ride a bike.  I had to test it so I could let her know everything would be okay and we'd all have normal lives after this.  So thank you to my new friend for giving me the courage to ride again.  Even if it was just so I could help you.  I wanted to help her but I helped myself too because she gave me the courage to try it.  So you see people. Here's the lesson of the day...Helping other people is good for you.  Healthy even.  Even when things look bleak for you try in some some way to bring goodness to the world.  Because you always get back more than you give.... 

Jenny