Well lately with so much stress my chest pains have returned.  Yes there have bee a few minor ones but nothing note worthy.  I learned that my cardiologist retired so I am still waiting to hear back as to who my new one will be while in the mean time here I am in pain with no one to turn to..

Update

So lately I have been having pains but nothing horrible. I recently learned that my cardiologist is retireing. This will be my third cardiologist to retire..  its frustrating. I hate the process of getting used to a new dr.. its annoying going through all the info and tests again.

Feeling off today. Big pressure in my chest that has been there for over an hour. Took some tylonol but its not helping

Had a super sharp pain. Only lasted a few seconds but the pain kinda lingered for a bit after it was more of an aggravation than pain after the effect

my heart has been fluttering and pounding but nothing painful, just seems to be slowing down..

So heart and chest pains are still there but not as bad lately..

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