4/27/2010- Vacation at last!

Hi!

Ahhh...vacation. Is there anything better? Additional vacaction? Ok, that would be better I guess.

I got back from Las Vegas last night at midnight- whew. I had a total blast and loved every minute I spent with Sara and Jenny. : )

I got in on Friday night and met the girls at the hotel. We stayed at Jenny's timeshare and it was fabulous! It had 3 (count em, 3!) bedrooms, so we each got our own room. Holla! And there was a private veranda that is bigger than our living room, dining room, and kitchen combined. Awesome I tell you.

We spent the whole weekend lounging at the pool, enjoying exotic beverages, eating yummy food and laughing. Tons of laughing. : ) We gambled a bit and saw a few shows- good times!

Here's some unbelievable news- I didn't get sunburned! SPF 70 in a spray can rules. I've heard rumor that you can get SPF 100 now. Oh, it's too much to hope for! I did have to put zinc oxide on my Sparky scar to prevent it from burning. The doc that said that a burn there would hurt like all get out. Ok, she said it would hurt, but I can only assume the amount would be "like all get out".

I did take all the precautions I could to prevent me getting heart-sick. I got wheelchair service at the airport, cause that's how I roll. ;) (Thanks for the joke Jillian). It was honestly a lifesaver. I guarantee I couldn't have walked to the gate without passing out. The real bonus is that I got to bypass all those healthy hearted suckers in the security line! Ha, that wiped the sympathetic look right off their faces. : ) Kindness for the ailing goes right out the window when the ailing get to cut in line. Heh heh.

Jenny and Sara also suggested we get a wheelchair from the hotel and use that around Vegas. That was really taking one for the team...do you know how hard it is to find wheelchair ramps in a casino? Hard!

Wheeling around Vegas was great, but not without it's snags. The first day, we got a bum wheelchair. The girls thought it was hard to push, but we kept going. Until we were crossing a cobblestone street in front of the Venetian, and we hit a bad cobble. And the little front wheel of the chair fell off!!! In the crosswalk! And the chair tipped forward and I almost fell out! (Nice driving Jenny. ; ) Anyway, a nice guy stopped and helped us put the wheel back on. Ah, the kindess of strangers!

We had a fantastic time, but I definately did feel the effects of the bum heart. I'm not sure if it was from doing so much (although we did kept a very relaxed schedule) or what, but my hands were super shaky, and I was nauseated a lot. And there were a few times when I had to prop up my head becauase I couldn't hold it up while we were wheeling around. I made a Drs appointment for this Friday just to check in and make sure all is ok.

It was a wonderful trip, and exactly what I needed. It took a lot of extra planning, but knowing I can go places again is so liberating!! And next time, Nick will get to enjoy the short security line with me! : ) Yahoo!

Love,
Jana

4/19/2010- Good news and confusing news

Hi All!

Man, it's been awhile! The good news- I've been feeling really good lately. : ) I'd say I've had about a 3-4 week good run, where I haven't had a bunch of PVC's and I've had good energy. Yahoo! I'm not really sure what the difference is here, but I'm happy for it. Don't look a gift several week run of good heart feelings in the mouth, I always say. : )

So that's the good news...now for the confusing news.

2 weeks ago I had a pulmonary stress test done. This test was a real bear. They hooked me up to a 12 lead EKG (which oddly enough only had 10 leads. I asked for a discount; they said no). I also had stickers on my forehead, a headband with sensors on it, a blood pressure cuff, and I had to wear a mask over my mouth and nose (like in Silence on the Lambs, but with a hose at the mouth). It was quite the get-up. Then I had to ride on a stationary bike.

They started off at no resistance, easy peasy. Then they upped the game. It got really tough, but gradually. I did the bike for 17 minutes! I was all proud of myself because the doctor kept saying "Good! Good! Excellent job!". I was pretty sure I rocked the test and blew them all away with my skill and excercising prowess (being that I've gone to cardiac rehab for WEEKS now). The one scary part was at the very end, my heart rate got up to 184. Sparky starts charging at 188. I had no intention of being defibrillated on a bike, so it's good that that's when the test ended.

So today at my doctor's appointment, I got the results of the test. And they weren't great. My nurse practitioner (NP) talked me through the results, but it was pretty confusing. The gist is that if I had a healthy heart, they would expect me to score a 31 on this test (sorry, I don't know what that scale goes up to...I don't think it's 100 though). I got a 16. 14 is the cutoff for "Severely limited". If I got a 14 or less, the docs would start looking pretty seriously at transplant again. Ack.

My NP was taking the positive approach- "Well, it's 16, not 14, so that's good!". Yeah, but 16 seems pretty darn close to 14. She said this number paired with my ejection fraction of 20% means that even though I'm feeling good and looking good (not bragging here, I just mean I have good color and am perky), these tests continue to tell the story that my heart is quite damaged and we need to keep a very close eye on it.

I decided that I wanted to talk to my cardiologist about this test and my condition as a whole. A State of the Union if you will. So my NP is trying to get me an appointment with the cardiologist within the next month or so.

In better news, I'm going to Las Vegas this weekend for a girl's trip! We are celebrating my wonderful friend Jenny's birthday. Jenny and her sister Sara are my best friends from Red River, NM, where we lived when I was in high school, so it will be awesome to catch up. This is my first trip involving a plane, so that should be interesting. I am going to play this heart thing up big time and am getting wheelchair service at the airport. Brilliant! Anyway, I'll tell you all how the trip goes, but I'm sure it will be fabu!

Ok, that's all for now...

I hope you are all doing well...I love you!
Jana