Saturday, April 28, 2012


It's one of my major issues.

I've had issues with trust ever since I was a little girl. I never liked going to the doctor and whenever I did, they always seemed to lie to me. "Oh this wont hurt" - Bullshit! I still have issues trusting doctors to this day. After my open heart surgery I still new something just wasn't right, and for 2 years, 2 horribly long years, my cardiologist and electrophysiologist said I was fine.

I took it upon myself to start reading all the medical records I had, which took me forever to find. But I came across terms I've never heard before. A bunch of EKGs that suggested I had an issue I never even heard about. I sent my cardiologist a copy of the EKG and a letter asking him what the hell was going on and why I wasn't informed of any of this stuff. And I kept reading, while waiting for a responce.

-Left Ventricle Hypertrophy
-Sinus Bradycardia (that explains the pacmaker)
-My shunts had stenosis
-Mitral Regurgitation (I personally asked him at an appointment what was up with my mitral valve and he said he didn't know but it was doing something funky)
-PVC's and SVE's

So many things never mentioned to me. I know before my open heart surgery there was a lot going on with my heart. It was dilated, appearntly everything in my heart was dilated. Maybe they didn't want to tell me everything because they didn't want to scare me. But I'm a person who likes to know whats going on with my heart, everything that's going on with it. I mean I never even knew why exactly I needed a pacemaker until after I got it! That's just not okay in my book.

Well my cardiologist read my note I sent him and said it was just a routine EKG and it was fine. But because I questioned him he didn't think he would be able to work with me anymore. He dropped me as a patient. Good I was about to drop him for not telling me all this stuff in the first place.

As much as I wished I could have been the one to drop him, tell him he was a bad doctor, because I do have an anger problem and I would have straight out told him he sucked, I was just glad I was rid of him. For the past few months I had started hating him anyways so this was coming for a long time. I took it upon myself trying to find a new cardiologist. I called the doctors at Sacred Heart in Spokane, where I had my last surgery but they never called me back. So I called a local, adult cardiologist who was only an hour away instead of the usual 4. I saw him and he also wasn't someone I could see myself with. Plus he told me he couldn't treat me because he doesn't know anything aboit CHD.

So I was at a loss, until a facebook friend who told me the guy who did my heart cath, an amazing fun man who I loved, was also a pediatric cardiologist! I imediatly called him and got everything transfered over to him. I like this guy from the start and knew everything would be great. They called me back a few days later saying he wanted to send me to Salt Lake City, Utah. He knew a great adult congenital specialist there who came to boise every three months. He said he'd take me but he thought I'd be best with him.

I met Dr Green about a week later. He told me more info that I had never heard of before. I have 2 supior vena cava's. Why weren't people telling me this stuff? But I imediatly like Dr. Green! He told me the truth and seemed to know what he was doing. He set up to see me in 6 months time for another check up. But I saw him a month later after being admitted to the University Of Utah Hospital. My A-Fib was getting so out of control, my heart rate was in the 190's and I hurt so bad and it just wouldn't go away. They gave me meds to lower my heart rate but it would ware off every 4 hours, which meant every 4 hours my heart rate would shoot back up and the pain would be back.

I spent 6 days in the hospital, had a TEE, cardioversion and med change. Finally someone was doing something. I knew I had been having rythmn issues for so long, it pissed me off that it took this situation for it to be caught. If the other doctors had listened to me and did more tests and help, maybe I wouldn't have had to spend 6 days in the hospital. Once I got out and went home I read through more medical records. The Adult doctor I saw, who said he couldn't treat me, did do an EKG and Stress echo and a month long event monitor. And the results clearly stated POSSIBLE ATRAIL FIBRILLATION. Why wasn't I told? Why didn't they look into it more?

It's been about 7 months since my hospital stay. Almost 6 months since my last cardiologist visit (I cant believe I finally made it 6 months between visits! I havn't done that since before 2008!) I see Dr. Green again May 25. My last visit with him he told me I was doing pretty good. But he didn't do an echo..why not? I'm use to having a echo every visit so it's just weird to me not to have one. Something I'll definatly ask him about. He told me I was doing well, but I've been having chest pains. Something I'm sure isn't anything, probably just scar tissue. But still I get worried. He and his nurses are amazing. They answer my questions and never make me feel stupid like my old cardiologist.

And even though Dr. Green has never lied to me, I still cant trust that I'm okay, when for 2 years I was told I was fine and I really wasn't.

1 comment:

  1. It's sad when doctors can't admit they just don't know everything and then transfer to someone who does. I'm sorry you feel so mistrusting. This CHD life is not easy. Just keep doing the best YOU can do. Good for you for seeking out someone who knows how to help you. I hope your next visit goes well. :)