8/30/10- Making some plans

Hi All,

Home again, home again. While the trip to Hawaii was just fabulous, I'm glad to be home. It's a lovely 65 degrees here, the air is sweet, and my DVR is full of great shows I recorded. : ) Ahhh.

After I updated the blog while we were in Hawaii, we continued to have a great trip. Lots of relaxing, hanging around the beach, sightseeing, etc. The rest of the trip wasn't without a little drama though.

We all wanted to go to Pearl Harbor, so a few days before we left, we went for a visit. Nick pushed me in my wheelchair so I wouldn't get worn out, but it was a pretty hot day (low 90's I think) so I was already kind of wimpy. We were only there about 20 minutes and I started feeling the effects of the heat in a bad way.

The only way I can describe the feeling is to say that it feels like the bottom falls out the bottom of my heart. It makes me nauseous, and it takes all my energy just to breathe. My head flops over to the side because I don't have the energy to hold it up. Nick and his parents rushed me over to a cooler spot with a good breeze and I perked up a little, but it happened again a minute or two later. Nick's mom said I turned really pale (except for my cheeks. Those things are always pink.) and I couldn't hold my eyes open.

The third time it happened, I told them I thought we should head to the hospital. Nick rushed to get the car and off we went. Everyone was really great, finding the directions to the hospital on their iPhones (thanks Steve Jobs!) and zooming off to get me taken care of. The hospital was about 15 minutes away, and by the time we got there, the air conditioning had made me feel tons better. So instead of going to the ER where I knew I would have to stay for 6-24 hours, we decided to eat lunch by the hospital and see if I continued to improve. I did, so we narrowly escaped a trip to The Queens Medical Center in Honolulu. Whew!

The rest of the trip I had good and not so good moments. But the relaxing was just wonderful. Thanks again to Gay and Pete for a fabulous trip! XOXO

Since we've been home, things have been good. I'm getting ready for my dr appt with my cardiologist on 9/10. This is where I will have another heart ultrasound and see how my heart is doing. We may make some plans about next steps (I hope!).

In other news, I was doing some research on top heart hospitals, and I was pretty shocked to find out my hospital is not ranked in the top 50 heart hospitals nationwide. Um, I didn't know that. They are a great facility, and are very highly ranked for other things (like cancer treatment), but they are not a leading heart hospital. So with this in mind, I've decided that a second opinion is something I need to do-soon.

The Cleveland Clinic is known as one of the top few heart hospitals in the nation, so I'm heading to Cleveland! Nick is pretty buried with job hunting stuff right now, so I thought it would be great to have my mom come along with me. It will be some great bonding time, and no one is more motherly than my mother. : ) And the other great part is my sister Rhetta is coming along too!

I don't have an appointment yet, but I had my medical records sent to them today (several hundred pages. Whoa). The heart failure team will take a look and let me know if they can see me for an evaluation. So please keep me in mind and in your prayers as I wait to get an appointment! We'll probably be there for a few days as they run all sorts of tests. I'm really excited to get some more eyes on this situation and see if they think transplant is right for me or not, and in what timeframe. And who knows, maybe they know of some other treatment I haven't heard of! We'll just have to wait and see.

So anyway, it sounds like I will get an appointment in late September, but I'll keep you posted when it's firmed up. I'm pretty excited, but I'm trying not to get my hopes up. I tend to do that, but nonetheless, having the best heart folks in the country look at me can't hurt. : )

Well, that's all I've got for now!
Love you all!

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