I wore a shirt that exposed my wires at work today. moms noticed and asked about it and honestly i was ok with talking about it. today i was ok about it. later i dont know.. someitmes thinking about it makes me want to cry.

so i have had the monitor a few days now and have had to call in a few transmissions sofar. almost made it a day without pressing the button but then i got short of breath and my heart started pounding while just sitting still. it should do that but its been happening alot lately.

Heart monitor

I got my heart monitor today.. i have to press a button whenever there is a pain or anything that feels off. then i have to call in to a receptionist, set my phone on the device and press a button. nto exactly convenient for my work schedule. i have to wear it for 30 days

Been crying tonight emotionally and physically my heart is done for the night... Perhaps we will try living again tomorrow :(

My hearts pounding and skipping so bad I kinda want to throw up. Its amazing what nerves can do to you

I set up my appointment for an MRI today its gonna be one April 14 and i have to be in seattle by 745am, not so fun but i do have to work that day..heart monitor still isnt here yet but looking forward to using that for the next month.

part of my own generation

Did you know that if i was born a few years earlier i wouldn't have survived my disease? I learned that at my appointment this week. there is a whole generation of 20 somethings who never would have survived if they were born a few years earlier.  one of them was even and Olympic medalist how cool is that!?!  I also learned that i intimidate my cardiologist, I am his youngest patient and basically the first patient he has seen with my disease so that is why he is calling upon so many other drs to help along the way. We even got to see that i dont have pulmonary hypertension i just have a stenotic replacement valve that needs replaced. and the stenotic valve makes it seem like i have pulmonary hypertension when i don't. the drs sont really know how to work with me because they haven't ever had an adult with my diease.. its kinda weird i guess. but there is a dr at the UW Medical center who specializes in the generation of congenital heart disease kids that have grown into adults so she can monitor us and know how to help us and know when to fix us. so in the next few weeks im supposed to go see her for a meeting and and MRI to determine when i will need surgery and what kind of surgery to do..

Tightness or almost cramping has been through out my entire right arm for the last 20 minutes. Stretching it isn't helping ugh

Sharp pains lower ribs deep inside pains in my arms to my elbows andnothing I do can help it

Hearts pounding in anticipation but there is also a slight pain to the left and its mostly uncomfortable

Had a pain just inside the ribs. Stretching didn't help but it went away afTer 10 minutes

Pain has been shooting up and down my entire left arm for like an hour and nothing I do will fix it ugh

Sharp pain on the left side deep inside. Stretched a little and it did help but didn't stop it

Just got off the phone with my cardiologist. He called me! He called to make sure I made my appointment. And to see how I'm doing. Never had that happen

Hearts pounding up my throat tonight. Is it nerves?

The Average heart beats about 43 hundred times an hour, that's 800 thousand times a week, 9 million times in a crisp fall and 2.7 billion beats in a lifetime. Well What is an Average heart anyway? And how many beats do broken hearts get?

sitting here at work rocking back and forth unvolentarily because my heart is pounding. not making me short of breath but getting fatigued

Sharp pains deep in my chest. Ouch

Hurts a lot to the left right now. Its a mix of sharp pain and pressure

Having tightness and small pings of pain its been about an hour sofar.

Recently I have been noticing a pain that starts just off center of my chest and rises strait up into my neck. I believe that's my aorta issues

Woke abruptly tonight to a fast sharp pain in my chest. Wow

Just off center of my chest it hurts almost like a cramp but also that feeling you get after being hit it radiates up my neck and into my jaw

Had a big sharp pain that lasted maybe 15 second and took my breath away. Wow

Left arm hurts a lot cramping/burning cramping pain its been going on for a while. I just feel worn out and feels like crawling in my skin

Sharp pain inside at the uppser right side of the sternum just underneath

Hearts pounding tonight. Labored breathing along with added beats and sharp pain inside my lower sternum.

my hearts pounding and pinging and stabbing off to the right side. hurts alot

Walked home from work today. there was definitely a pain in my chest the entire walk but it was livable ish

Pains again today. On the left/center side towards the back.