6yrs post op

Well my yearly check up is coming. Since my last check up I have noticed new issues. I have been having more AFib with rvr. I only know this because of my cousin who is a nurse and witnessed an episode. It should be interesting to see what the drs say about it.

Feeling fine

Well I must say my heart has been doing wonderfully. I still have the random far apart arrhythmia and rapid heart beat. Maybe 4 times in the last year. I am not as active as I was at the beginning of the year but I am still doing good.

Today I participated in the American Heart Association Heart Walk

Today Ash Carol and I did the American Heart Association Heart Walk. It was such a great experience. We got to see all different kinds of people support and be supported. They had a wall to memorialize the loved ones we have lost and to support the ones living with heart disease. They even gave out hats to the survivors, I don't usually do hates but I work mine for most of the day. We walked the entire 5k, it was not as hard as I thought it would be. Can't wait to do it again next year.

Today's the day

Today is the big appointment. One yr. I know I feel better. Let's see what they have to say

Appointment coming up

My one yr appointment is next week. Tho technically it was a yr in January, should be interesting to see how my heart has settled in

Update

Well I know its been a while, but wow. The Surgery in 2012 was suppose to be a good fix, and it was for a while. The Melody Valve lasted almost a yr. and a half. In the Summer of 2013 I noticed my body was slowing down, changing, and not for the better. It was a stressful time of year. in July I went to the cardiologist and they noticed things weren't good but wanted to keep an eye on things. While I was dealing with quitting one job and finding another with health benefits, stress didn't help, I went in in September and they noticed things were changing still and planned for an ultrasound in November. That ultrasound and an MRI told them that what I was feeling was actually happening. my Melody Valve had calcified. Blood was barely getting through my heart. They told me I needed Open Heart Surgery immediately. Surgery was Scheduled for Jan 21 2014. I told my new boss, had health insurance, and they even agreed to keep me covered while I was out for surgery and recovery. Leading up to the surgery I was fine, I talked to the Dr, I knew what was going to happen. its not like it was new for me... it being my 5th heart surgery. I worked up until the day before. I was ok with everything, I talked it through with B and answered any questions he had. he seemed ok... a little scared but ok about everything. The Morning of the Surgery we got to the hospital we got there first. Ramona came a bit after and visited me in the pre-op room. the whole family took turns. I was ok I was terrified but I was holding it together. Then I got a text from B that he was there in the waiting room, and when he appeared around the curtain i burst into tears. I was relived, happy, feeling loved and terrified all at once. He came and was there for me. He even took the week off of work. He was there when I was wheeled into the Operating room. I was told later that a lot of family came. My surgery took a little longer than planned, which scared them a little. My aunt told me how precious B was and how relived he was when the Dr came in the room. Once I woke up he was there.. he was there even for his birthday. My stay in the hospital was fairly nice, i got xrays every day and had to take walks immediately to get me uo and moving. i was sick and in pain and not eating and throwing up. I had drainage tubes connected to me most of the days i was there and i remember the pain of them taking them out. I was discharged from the hospital January 29th. I took my own stitches out a few weeks later once they started to hurt and change colors. That's not even the best part. The Best part is that I no longer have an awkward bump on my scar, i have a new flat scar, that healed very well. I also have a brand new heart beat. A REGULAR HEART BEAT! for the first time ever! every once in a while it gets a bit wonky but its for minutes not yrs. Im still building up energy but i feel so much better. Im just hoping this one holds.

cardiologist trip this week

Wednesday I finally got to meet with the specialist. it went better than i thought it would. they only had to take an ecg test to see how bad my  heart has gotten. with that test and the charts from my last tests in april and how bad my body is doing physically they decided surgery in in the near future.. they are hoping by september.
they are going to attempt cathater surgery first and if they cant do it they will go for open heart. now all i have to do is wait for the surgeon to call and pick a day. i am soo ready, my heart has begun to effect my sleep. im waking up multiple times a night with my heart pounding  and its driving me crazy. the vein in my neck has been throbbing for the last 6 monnths and is only getting more frequent. i usedto go days or weeks in between feeling any pain or pounding and flutters. now its daily, its hourly. i am always feeling it everywhere. it is wearing me out, its breaking me down.. im ready for surgery to happen. ready for something to be fixed.

Meting with the specialist!

So I met with my new cardiologist and let's face it he is awesome and way better at telling me things ad showing me what I never knewabout my heart. He is so good he is sending me to the UW Medical center to see a specialist because he actually believes me when I say things are getting worse. I have an appointment on july 11th to meet with the specialist. Can't wait!

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

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.

Holy Crap so much stabbing pain at the moment. just left of the center of my chest. stops my breath and makes me kinda want to scream. not cool

Hearts pounding makin me tired. Hard to breath

A pressure like feeling pushing out from beneath my sternum hurts a lot

i keep getting these quick stabbing pains that last only a few seconds but happen more than once. swift sharp ones on the inside that feels like someone is jabbing me with a needle

Tightness in the center. Kinda hard to breath. That along with fluttering.

Been in bed for a while just layin here with my heart pounding

hearts beating crazy tonight. not effecting my breathing yet so its not uncomfortable just a strange feeling

Alot of stress at work lately. definitely hasnt been helping the heart issues. havent been blogging as much but the pains havent stopped. alot of pain even now.

hurts alot in the back is area of my left side ribs. owch.

sharp pain still there but spread a little bit

sharp pain left of sternum

Heart failure hurts

Chest is feeling kind of tight today. Very uncomfortable

Sharp pain in my sternum today.

hearts working hard today.. feeling very worn out and breathless

Hearts pounding.

So my pain is radiating to the left of my sternum and is basically flaring out the top and bottom of my ribs plus its feeling tight

Breathing is pretty labored today. Can barely sing without losing my breath. Hearts pounding again

Having a constant ache. No real pinpointed spot of pain it just all hurts

Hearts pounding hard today. Shaking my whole body.

Surgery planning meeting set for March 22 @230pm

Hearts pounding super hard. Doesn't hurt but is throwing off my breathing making me tired

hearts fluttering again. its the kind that catches the breath and wares me out.

Sharp pain to the left and center of the sternum. Hurts a lot but still tolerable

Sitting here hearts pounding.

Uncomfortable tightness spread through the front

Had a chest xray done this morning. No results yet.
Having a few muscular pains but also some inner pains along the lines of sharp piercing pains just behind the sternum

Have had a tightness in my chest for a few hours now.. Making me stressed

Had a sharp pain in the sternum. Lasted only a few seconds but the pain radiated out and is lasting a while

Owch. Pain inside towards the back. About a 7 or 8 on the pain scale

Pinching slash stabbing pain in the back left ribs

a few sharp pains today but not completely horrible so far

Quick sharp pain. Left side

Hearts pounding so hard it almost feels like hickups

Lightheaded all day. Heart hasn't been pounding too much just has a weird. Beat to it making it feel like someone is sitting on my chest.

Ooow. Ok that hurt. Stabbing pain the starts in the back and goes strait to the from

ended up in the urgent care last night. after 9 hours of chest pains i decided to go in. was there for three hours and then went home with nothing done but a chest xray and some blood tests. while there my heart was skipping a bunch and pounding but there wasnt much pain. and of course the second i left my chest was filled with the stabbing agony i had all day. honestly it hasnt stopped. I went into work today and took it easy. luckily it was an easy day. Still hurts like crazy.

I dont know if my ability to feel the pains more now that before is because they are getting worse or my pain threshold is getting worse. but after 9 hours i am still having major pains and irregular arrhythmia i am heading to the urgent care. Breathing is harder and i want to sleep like now.

Debating the ER trip. Not sure if it will help or if they will just send me home again?

When Is the time to go to the emergency room?? i dont want to go and have them tell me "oh this doesnt mean anything for you"

home early from church. in too much pain to be in public and not cry

Even my arm hurts. Its almost like its cramping

I never cry from pain. Today that's not true. I am in soo much pain I can't help but cry.

Still labored breathing. Makes me want to curl into a ball. Feels like I could close my eyes and sleep very easily

Hearts adding a beat this morningg plus its pounding like crazy. Feeling very tired and worn out

OOOWWW! lots of pain right now. sternum feels like theres a knife going out from in

There's a pain making breathing hurt. Also making me kinda nauseous

feels like pressure building and building, its tolerable but not comfortable

fluttering big time this morning. no real pains sofar but its still early

Ahh the pain returns. Its the uncomfortable pressure pain definitely not feeling ok

Lots of pains today. Basically a constant today. Not counting it as an awesome day :(

My ribs feel like someone is pushing from the inside out

Lots of sharp pain happening. Hurts to breath. Ugh

A lot of tightness in my chest right now. Still kinda shaky

Burning sensation ontop of other symptoms is making me feel even worse

Heart pounding so hard I can't sit still. Its rather annoying. Still short of breath and feeling somewhat nauseous.

Feeling shaky. Light headed. Short of breath and my heart is pounding and beating irregularly.

Pain that is radiating from my chest to my arms.

Very short winded today. Could barely make it through circle time singing today. Strange tightness in my chest too.

Hearts pounding like crazy tonight.

Ribs hurt. And deep inside pains

Today I wish I could pop my chest the way I pop my knuckles. Feels like a lot of build up pressure

Pain on the far side just under the ribs

Pain deep in my chest kinda making me feel nauseous

Feels like I'm being pinched from the inside.

A feeling somewhere between a burning pain and a stabbing pain deep in my chest is hurting me.

Heart pounding making anything but shallow breaths impossible

Tightness under and around my sternum. Not horrible just noticeable

Lounging in bed getting ready to sleep and my heart is pounding. Feels like its gonna jump out of my chest

there is slight pressure under my bones.. not horrible but not fun either

Strange kind of burning pain in the center of my chest its almost like breathing through a hole. Kinda.

It seems like I have had this pain forever tho I know its only been like a few hours. The center of my chests is killing me. There are days I wish people could just hold my hand and know how much pain is pouring through my bones and my chest

Already very worn out today.

You know that kind of pain that hurts soo much that you want to throw up? That's kinda how I have been feeling for the last half hour. Nothing I can do will help it. Its days like these I wish something would numb the pain.

Tightness and pressure in center of chest for like the last 10 minutes. Causing shortness of breath?? Yes

Fluttering in chest. Short of breath

Very sharp pain in entire area. Very painful. Took my breath away

A hot and cold feeling radiating in the front with sharp pains coming from the front and the back. Not entirely painful but uncomfortable

hearts still pounding irregularly but my breathing is doing ok for now. I have had a few sharp pains in random areas but im ok right now

Hearts pounding so much I can see my chest moving. These are the nights just breathing is hard

So Much Pain!

Sometimes i wish i could crack my chest open just to relieve the tension. It almost feels like my heart is too big to fit and is trying to push its way out. SSSOOO much pain!

Cramping spread across the chest very uncomfortable at the moment. Shallow breathing and lots of stretching happening. Just can't get comfortable.

At times it helps not to breath for a bit. To hold that pain at a certain amount of pain.. An amount that hurts but hurts just enough to my make living unbearable

Pains start under the sternum and switch sides. Pain that hurts not just annoys

A few quick pings of pain under the sternum. Followed by a pain that seamed to melt slowly

Sharp pains again.. quick jabs. that along with the pounding is throwing off my night. It makes me tired and uncomfortable.

Tonight My heart is pounding. just sitting here the pounding alone moves my body to its beat, it takes my breath away but doesn't hurt.

My Diagnosis

I was born with this.. for as long as I remember there has been a pain in my chest. I was born with Pulmonary Stenosis and had my heart worked on 3 times to fix it. But in the last year or two my cardiologist noticed new developments what weren't there before. Things that I had noticed but didn't really realize at first that it was a new symptom. I have been diagnosed with Tricuspid regurgitation and aortic aneurysm which is basically my valves are sucking back a little bit of the bad blood and that the walls of my Aorta are thin and need repairing.
In march we have a meeting planned with my cardiologist and my pediatric cardiologist to make sure all the info is there and to see what can be fixed. There has been talk of either two minimal surgeries or one big one where everything gets fixed at one.. I'm voting for the second option.

The Beginning

Tonight my heart hurts.. My chest hurts. It’s the kind of pain you cant just ignore.. for years I have been dealing with chest pains.. Hiding the hurt and anguish.. But recently, literally in the last 5 months the pain has been sometimes unbearable. Stabbing pain, throbbing, irregular beats and aching in the muscles and bones and caverns in my heart. The pains last from 1-2 minutes to hours upon end. They measure from the lightest ping to the stabbing unbearable pain that takes my breath away. Nothing I can do will help with the pain, yes some times I take pain killers to take the edge off but nothing really takes the pain away. Stretching and twisting helps in small spurts but again is only a momentary solution to my problem.

The pain Radiates between a single point or wide areas that feel like I'm being stepped on. It can be a burning feeling or the feeling of someone jabbing me with a sharp spike. It hurts on different side, in the back in the front. It can hurt in the center or off to the side. mostly it happens just to the side of my sternum. When my chest hurts it sometimes sends sharp pains into my arms that seem more like a cramp than anything.