I am in no state to be writing a blog right now.

Jana- step away from the laptop, you are far too emotional, grouchy, sad, excited, bewildered, defeated and hungry to be to communicating with others right now. Stand by while I blow my nose, wash my hands, and get a snack.

*10 minutes later*

Ok, I feel like a different person. (by the way, the leftover porkchop I just ate from last night was delish).

So the whirlwind I'm in started with me giving notice at work yesterday. That was exhilarating at first- I really felt like I made a big decision and it was the right one. But as the night wore on, it really just hit me how much of a life change this will be. I'm used to having work be a major part of my life and how I define myself. And now, that's just gone. It's really weird. And now I have to find a new way to define myself. Hmm, I sound like a self help book on the clearance rack at Borders.

Next, I had my appointment with my cardiologist this morning. It was what I've come to expect- more of the same treatment plan. Good news though- my heart function had gone up to 23% (from 18% most recently). We also looked at my heart measurements over the last year and it shrunk from 7.2 centimeters to 6.8%. Not a lot, but it is certainly moving in the right direction. She said she thinks I am going to be one of the patients that improves very slowly, over a long period of time. That was hard to swallow, but I'm getting my head around it.

Honestly, I've been hoping that it will be transplant time, but it doesn't look that is in the cards anytime too soon. She told me getting on the transplant list would not happen the way I am now, as I would be listed as a status 2. No status 2's are getting hearts these days because there are so few hearts. Only status 1's are getting hearts (those that have to live in the hospital or are on 24/7 IV med drip). So there is no point of getting on the list- we just have to keep a close eye on me to see if my status needs to change. She did set my next appointment with her for November instead of the normal 4 months away. So I like that she's ready to keep close watch.

Also, this morning I got a call from the Mayo Clinic about the appointment I requested. I was super excited. PS- they get an A+ for customer service (and I am a TOUGH grader on customer service). Everyone I talked was sweet, helpful, and smart. They said they could see me as soon as Monday, but I set an appointment for the 21st, because I need to make travel arrangements.

I'm really excited, but I am bracing myself for the outcome to be the same as my doctor has said. I think one of the reasons I'm upset lately is because I see that "magic bullet" I keep hoping for slipping away. I think the next thing I need to do is be ready to start creating a life I want, knowing I have certain parameters I have to work within (and around). I'm not sure what that life looks like yet, but I'm not going to push myself to figure it out today. In case you haven't figured out, I like to know what's going on NOW, but sometimes I just have to be patient (blech. the "p" word" : ).

Anyway, I hope this note doesn't come off as ungrateful or too grouchy. I know I've had a lot of good news in the last few days, but for some reason, tonight I'm just overwhelmed and can't quite be happy about it yet. Tomorrow, I'll bet. : )

Thank you all for the sweet notes, thoughts, and prayers! It helps to know I have so many people cheering for me as I am on this crazy ride!

I love you all,

1 comment:

  1. Looks like Nick won the heart function pool. That is unless you're playing "the Price is Right" and you can't go over. If that's the case, then no grey socks for you, my friend.