Monday, September 10, 2012

We're Not There Yet.

A week in Salt Lake City!? What was I thinking?
In all honesty, it wasn't horrible. We (my mom and I) came down on the 4th the day before my cardiology appointment.  Which was great because that night was a fundraiser for my heart brother Cooper! It was great to go a see him again and show my support.
-Cooper and I in August- 

September 5th was my appointment. I went and got an echo and saw my cardiologist. It went really well besides having to lay in an uncomfortable position for almost the whole time. But we got some great news. My cardiologist  told me I have the best ventricle function post fontan out of all of the patients he see's in his clinic! Yay go me! I don't have to go back for another eight, yes you read that right EIGHT months!!! It took me so long (3 years!) to get to finally being able to go every 6 months and now its eight!

After that we got a few days to relax. A vacation for sorts. My friend, a heart momma, did my nails!
-Beautiful thanks Ali!-

I actually spent a lot of time with her and her awesome son this trip so it was great.
 -Her awesome heart hero Tanner- 

I of course had to go up to Primary Children's and see my amazing heart brother and sister who are there waiting for new hearts. Matthew and Kylie. It was great fun, Matthew and I had a huge battle with agent P. He beheaded me, so of course he won!
-Matthew and I-

Kylie was such a cutie as always. Playing doctor and smelling books. She even let me sniff her book also! She was taken to the CICU recently and needs many prayers. 
-Kylie and I-

I even went to my very first heart walk! It was great fun! My mom even got some amazing heart mom shirts!
-First Generation (as I call her) heart mom and damn proud!-

I do got to say probably one of my favorite parts of the trip was last night. I went to dinner with  4 heart moms and there kids. Kaylyn and her beautiful 8 week old Bailey and Bailey's sister Mckenzie, Jessica and her adorable 6 month old Clara, Ali and Tanner, and Hollie and her dear daughter Elaina. It was so fun, full of food, fun, laughs and a lot of support, love, and understanding. 

I really love my heart family, even though there is a lot of heart ache, there is also a bunch of love. Well today was the big appointment. The one where I find out if I need surgery.  We started out the day shopping and got ourselves a little confused and showed up to the office about 10 minutes late. They took us back really fast, did the vitals and the pacer interrogation started.
I asked him to look and see if there was any recorded events from Friday night. The night I had 20 minute episode of severe pressure/pain in my chest and jaw. Something that has been happening more and more recently. Nope nothing. It showed a 30 second arrhythmia around 6:30 pm but nothing at 10pm the time of the episode. 

And that's when I knew the appointment wasn't going to go very well. The guy took about an hour to interrogate the pacemaker. He did it said were done, unhooked me and walked out of the room. But then came back and said he needed more. He then unhooked me again and a few minutes late 'oh wait I forgot to ___' 

But finally he got it all. And that's when the doctor finally came in. He told me they had to change the pacemaker settings, AGAIN! Seriously?! They've changed it at every single visit since last September! What the heck is going on? The lead that they thought wasn't sensing seems to be sensing a bit more. There was 19 recordings on the pacemaker. At the moment he says since my arrhythmia's dont last to long, he doesn't want to do anything about them. He doesn't want to add any drugs and risk putting to much stress on my liver and kidneys. And since my heart anatomy is so weird an ablation is hard to do, so he doesn't want to try when they aren't lasting long. As of right now, he doesn't want to crack my chest to replace the lead. Not yet, but it will probably end up needing to be done eventually. When? Not sure. But we just aren't there yet. 

I talked to him about my severe chest pain. I told him how when I was in the ER they gave me drugs to stop my heart, and how the chest pain I've been having feels exactly like that. It's a terrible pain. So much pressure in my chest and just horrible horrible pain in my jaw. It's unbelievable. He said he doesn't think its heart related, and I'm not old enough to have angina. He thinks it might be an esophagus problem. WHAT!? How can severe chest pain like that be an esophagus problem? 

As we all know I have really bad trust issues with doctors. I'm trying to trust him on this but it's just really hard. He said he will talk to my cardiologist and see what he wants. So its up to Dr Green whether to order more heart tests or get me a prescription for the esophagus problem. I'm really trying to trust them. I know they will do what they think is best for me. And I will try it, and see how it goes. I just have issues. I want to trust them fully. I don't want to have any doubt it my mind. But my doctors before ruined that for me. 
I'm learning to trust again. I'm just not fully there yet.