Sharp pain just to the left under sternum. Very uncomfortable. Lasting atleast 10 minutes. Stretching doesn't work. Feels deep in

Having a lot of muscular pain today in the chest. Nothing seems to be helping it

Ow. Pain inside close to the back. Plus uncomfortable pressure.

Off to my MRI at UWMedical Center. I was ok but now I kinda want to throw up and cry. We haven't even reached Seattle yet. Stupid nerves.

Every day he breaks my heart a little bit more and more. can the monitor sense that? can it hear my heart breaking bit by bit?

my heart has been pounding and fluttering basically for the last 3 hours. i have pushed the button twice durring the most intense times but i cant exactly just hold it for hours upon end.. its the fluttering that is throwing off my breathing and everything. hope it dies down, i want to walk home tonight.

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