Hi Guys,
I'm feeling a little low tonight so I thought I'd write a note to get it all out.
I know I've been mostly chipper, but tonight is one of those nights where this thing is hitting me. Dr. Fishbein (the head of the cardiology dept and my doc) came in talked to us for awhile tonight. He's not letting me go tomorrow because my blood pressure is wobbly and hasn't been very high. Also, I've been getting lightheaded and they don't want me to go home like that.
He just reminded me tonight that I'm really really sick. I look good, and I feel pretty fine, and I'm in a good mood mostly, but my tests and lab results tell a very different story. I'm running on about 20% of my heart, and the echocaridogram didn't show my heart getting any smaller. I may still be in the 33% that get completely better, but I could just as easily be in the 33% that has to get a transplant within a year and half to two years. And that's scary.
I just feel so mad that this happened. A month ago, I was fine. And now, even with best case scenarios, I'll be a cardiac patient for the rest of my life. It's feeling so damn unfair right now. And I know I'm having a pity party and it could be much worse, but this just feels like a lot to take right now. And I'm mad, and sad, and scared. And I wonder what the heck are the odds of this happening? I think I need to play the lottery right now and see if my wild luck continues.
And I'm scared to think about what could happen later on. I asked Dr. Fishbein if I could recover really well and then get some other virus and be really sick again and he said yes. So do I have to be scared of landing in the hospital again? Probably. I just need to learn how to deal with this. Sharing it this way does help though. I'm sorry to be a downer but I know you all are such good friends you'll let me cry on your shoulder sometimes. Well, I'm cashing in that coupon in tonight. : )
The thing I'm most afraid of is that all of this won't work, and I won't make it. I'm not afraid of dying, but I'm so so scared of leaving Nick and my family and friends. It seems like the meanest thing in the world I could do, and I can't bear that thought. I just can't do that to them, I just can't.
When I write (or think) something like that I wonder if I'm just being overdramatic, but in just about every conversation I have with the docs, they talk about my risk of sudden death due to this. And I can keep focusing on the positive (which I absolutely will do), but those words do stick in your head. I think that Sparky has helped that risk a lot, but it's still there.
Well as much of a downer as this post is, it's made me feel better to get it off my chest and to cry it out. Thanks again for all your love and support. I'm going to wrap up in the love blanket and go to sleep (with some Ambien ; ).
I love you all!
Jana
PS Stacey and Jillian, can you not share this one with the other teams and stuff? It's a little raw for such wide distribution. : )
Nick Morrelli I love u sweetheart. You are so brave.
Kitty Muller lots of love and hugs sent to you dear jana.... no one knows what tomorrow will bring for any of us.... just try to focus on one hour or day at a time.
Aradia ofSeattle Don't apologise for being a "downer," girl. I'm proud of you for sharing your real feelings. This shit sucks, but we're all here for you. And if anyone can pull a miracle out of her ass, it's you. :-)
Daniel Fletcher You are an inspiration to everyone you meet. You will always have any support I can give.
Kelley Dees Atkinson I hope you are feeling better this morning! Both physically and emotionally... It's totally not fair that you have to deal with this! We will be praying for the upper 33 percent! 3 cheers for the high end of the bell curve!
Lisa Thompson Jana, hang in there. We're all keeping you in our thoughts and prayers. Even the most cheerful and hopeful people go through times of doubt and despair, and that's why you have friends and family to support you in those moments. Please take care of yourself and just take it one day at a time. Sending you hugs and happy vibes from Austin...
Jenny Lavik Jana- I'm so sorry you have to go through this. It is sooooo NOT fair! I really wish I could come visit you this weekend. It sucks being so far away during this. I am really looking forward to seeing you in a few weeks! Hang in there. We are all here for you anytime you need us!
Patty Morrelli Tapney Jana, you are an awesome woman. I'm so sorry that you are going through this. We really do not know what each day or moment can bring. Sending love and big hugs to you, and wishing that some more of us could be there to lend you more "physical" support, In the meantime it's just "mental" and "spiritual" and there's plenty of that.
Stacey Thomas You are the strongest, bravest woman I know. I'm here for you and Nick. I love you both so much!
Greg Morelli Hey Jana, we're sending all our positive thoughts your way. Although you may not be healthy in body, your spirit has been a shinning light and your strength is a beacon for us all. So keep the spirit, girl. Sending our love to you all the way from this side of the world. Uncle Greg and Aunt Isabel
Jillian Nicholson McJannet you sweet thing. we love you guys so much - just know we are there to support you in any way, shape or form. you inspire us, Jana! xoxo
Luis Cheng-Guajardo Hang in there Jana, I think you're doing awesome! I'm thinking about you and you've got lots of wonderful people that all love you and are hear for you!
Travis Rubelee Jana, you're doing so great! Don't be down, Katy and I are thinking of you and wishing we could be there to help you guys out! I'd love to come and get Nick a cake for his birthday! Hang in there kiddo!
Chuck Ramanujam We're thinking about you jana. Sending lots of good thoughts your way! I'm sure you will get thru this just fine!
Michelle Gonzalez McMullen Oh Jana. This is a very scary thing and I would be very concerned if you were not feeling this way. Remember, God is with you every step of the way. He knows you are angry and sad and confused. He is also there to hold you in his arms when you just need to cry. He is your Love blanket. His support is tangible and real - you can see it in all of the words written above and in so many other ways. I am sending you a big hug right now. Love, MGM
Rosa Roberge Jana, I just read this post. It's important to share how you are feeling and 200% understandable that you can't be chipper and positive all the time particulaly considering what you are having to go through. You have lots of people behind you. If you are not in the mood for a visit tomorrow, I totally understand. I can send you some treats in the mail :) I'll wait to hear from you either way. Here is a great big hug for you!
Mandy Morrelli Young Jana, I'm so sorry you have to go through this! I wish we could be there to help keep your mind off of things, this is so unfair. You have been one of the most positive and optimistic people I've ever known. I'm happy you have an outlet for your feelings. This must be very scary, please know we are sending you lots and lots of love, positive thoughts, feelings, and prayers. We love you so much and l think you are doing AWESOME!
Jenny Hawkes Jana, We love you and always have. We wish we could be there so you could actually cry on our shoulders. I think it is good to think positive thoughts and not dwell on the negative, but always feel free to share your true feelings no matter how raw and emotional they are. It is not good to bottle up those emotions. That won't help you get better. I love you!!!!
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