I'll be honest. I act brave and proud. I am a CHD warrior. But, I am scared. The nightmares are starting again. The pain is coming back. So how much longer until I'm in heart failure again?
Let me tell you a little bit about my life before my last open heart surgery. I doubt nightmares had anything to do with anything, but there was alot!
The pain was horrible.
I had trouble breathing. I could put my hand on my chest and feel my heart beat. So strong, so hard. I didn't know I wasn't suppose to feel it by just touching my chest. The heat made me so sick. I'd get so hot and so nauseated. If I moved to fast my heart would pound. And it got to the point where just walking room to room just hurt so bad. My heart would hurt when I moved. It pounded and the pain would be so bad. I got the worst headaches. It got to the point where I would just sit and cry trying to wait for it to pass. It always did pass eventually. But then I'd have to move again.
I know what you will say OMG! Why didn't you go to the doctor alot sooner. I know I know, I should have. But I was trying to ignore my heart defect. But I learned my lesson. When I finally did go to the doctor I learned some scary stuff.
* I was in atrial fibrillation and was at a high risk for clots and strokes.
* My heart was dilated and up against my breast bone.
* My fontan surgery wasn't lasting.
* I was in heart failure
* I could drop dead any second
* without surgery, they only gave me 5 years to live.
So I had my second open heart surgery (6th heart surgery all together). They did the maze procedure to fix the A-fib. They removed part of my heart. They did the fontan revision, and they implanted a pacemaker.
They told me a week after surgery that my heart was looking great and there was hope for no more surgeries. But If I did need another surgery It would be a transplant because I was all out of options.
Its been a little over a year now. My last cardio app in march went well. They told me my heart looked good. They even told me I could move my apps to every 6 months instead of every 3. But I'm still having issues.
I've been having alot of issues with tachycardia since surgery. I've gone to the ER at least 3 times. They always tell my I'm fine. And when they tell me I'm not fine and should see my pacemaker doctor, I do go, and he then looks at me and says.. well now your heart is acting normal again. We don't need to do anything.
Well the pain is coming back. This time is different pain. A more excruiating pain. It starts with a sore jaw. Then It moves into my chest. And then my chest, shoulders, and jaw just hurt. It hurts like a fucking bitch!!!!! This has happened twice. The last time this happened my aunt was talking to me. She stopped dead and just stared. She asked me if I was alright. Trying not to make her worry I was like yeah. She is like no Jess, You are whiter then white. Why are you so pale whats wrong.
And now, the old pain is starting again. The moving to much is making my heart pound again. I get so out of breath and tired.
Maybe I'm just a worry wort. But Im scared. What if the heart failure is back? What if my heart is dilated again. What if the surgery is failing??