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!

Hawaii check in- 8/22/10

Hi All!

It's a quiet Sunday morning and I thought I'd check in and share how the trip has gone so far. In a word- Snorktastic!! We snorkeled at Shark's Cove yesterday and I am enamored. We saw TONS of fish, the kind you only see in your dentist's aquarium. Angel fish, puffer fish, this fish that looked like a noodle, clown fish, and about 20 other kinds of rainbow colored fish. And we even saw a Humahumanukanukaapua'a (Hawaii's state fish. Duh).

And the snorkel trip was that much sweeter because the day before yesterday my snorkeling plans were dashed. We had gone to snorkel at Hanauma Bay, the place everyone says is a must see on Oahu. I wasn't feeling all that good as soon as we woke up that day, but I desperately wanted to go to the bay, so off we went. Nick and his parent's were wonderful to me- drove me right up to the entrance, stood in line to buy our tickets, and carried everything. But I still wasn't feeling right. By the time we got down to the beach (via trolley), I was feeling even worse.

My heart was pounding, I was dizzy, I could barely lift my arms. I sat under a tree for about an hour, hoping I would start to feel better so I could snorkel. But I didn't. I couldn't muster the energy to stand up, much less walk down to the water and snorkel. So I just watched and was so disappointed. It was a huge reminder of how my heart just can't make it sometimes, no matter how much determination I have. So we left, and went on a driving tour of the south east side of the island. We still a great time, but I was so exhausted, I could barely hold my head up. It was early to bed that night for sure!

So yesterday, when we decided to go to the North Shore to see the big waves, I was trying to decide to bring my swimsuit or not. And Nick said "hey, we've been planning in case bad stuff for so long, now let's plan in case good stuff happens!". I love him. :) So I brought my suit, and when we got to Shark's Cove, the water was calm and I felt really good, so snorkeling we went! And it was fantastic. : )

In other heart news, I did think I had a little Sparky event 3 days ago. It was late afternoon, and I was super tired. My heart started beating weird, and I almost passed out. I felt a hard thump in my chest and thought it was Sparky pacing my heart. We used my fancy Sparky transmitting machine to send a recording of what happened to my doc, and left her a message to call me back.

She called back to say that Sparky didn't pace me- I had an episode of atrial fibrillation. That's where the upper chambers of your heart beat really fast and out of rhythm. Though scary and uncomfortable, they are not dangerous. Yay for that! Boo for having more weird rhythms. I'll talk to my doc more about that when I get home.

So that's the heart highlights of the trip so far! We are having the most relaxing, lovely time here. The other day, we were going somewhere and I told Nick I wanted to drive. He was about to hand me the keys and then we both realized I'm not allowed to drive right now! We'd both completely forgotten. It's pretty nice to forget. : )

Love you all!

8/17/2010- Hawaii!!!

Hi All!

Just wanted to write up a quick note before we head off to HAWAII!!! We're going with Nick's parents , Gay and Pete, and we couldn't be more excited. A vacation is exactly what we need. Things have been a little stressful this year (I thought I'd downplay it today : ), so sitting on the beach, snorkeling, drinking cool beverages, and generally living "the island life" is what we want.

I got the sign-off on this trip from my doc about 2 weeks ago. She said as long as we were going to Oahu (we are) she was fine with it because there is a great heart hospital in Honolulu. So I wrote up a full list of my conditions, my meds, my doctors numbers, and the phone number and address for the Honolulu hospital, to carry with us just in case. It was kind of a depressing list, but whatev- we're going to Hawaii!!

We are renting a wheelchair there, so I can be pushed around in style when we go places with a lot of walking involved (Pearl Harbor, etc). And because of this, I got to pack cute shoes and not worry about packing sensible walking shoes. Ha!

We're going to go to Hanauma Bay to go snorkeling-oh I just can't wait. Nick remembers it from his childhood and the pictures I've seen look SNORK-TASTIC. : )

We'll go to the North Shore, drive around the island, hang out at lots of beaches (guarded by good ol' SPF 100 of course), and eat lots of yummy island food. I keep seeing rumors of shrimp trucks. Um, yes please. And sushi, oh the sushi!!

Well, it's about time to go, so Aloha! We'll be sure to post plenty of pictures.


8/6/10-Wait and see?

Hi All,

So tired, so tired. Just got home from a long visit at UWMC and am pretty pooped. It was a fine visit and nothing too wild happened.

Labs were mostly fine, and we'll be doing a few tweaks here and there. We did talk about my upcoming visit with cardiologist in early September (I saw my nurse practitioner today). I told her that if the echocardiogram I have in late August doesn't show improvement, I want to start thinking about transplant. And she put on the brakes.

I know it's her job not to rush things and to give the meds time to work. But we are now past the window where the meds would have worked, if they could. She talked about how you don't want to transplant too early, because the transplant meds can be hard on your other organs (kidneys, liver, etc). I told her I was aware of that (I've done pretty extensive research already) but that at this point, I'm getting really close to my wit's end.

Honestly, I'd rather get a new heart, go on with my life, and do all we can to help my other organs as we go. Plus, new meds come out all the time, and my hope is better ones will come on the market. Also, the meds I'm on now have lousy long term effects to my lungs and eyes, and if I got a transplant I could get off those.

I told her I can't just keep waiting for years for the meds to possibly work. My life is dramatically on hold right now and I don't want to stay in a waiting pattern for years. It's not fair to me, to Nick, or to our families. We are literally stuck and can't move forward with the life we want until I get somewhat better.

That was about the time the tears started. I'm glad I let her see my frustration and sadness. The docs need to see that. So by the end of the conversation, my NP said that we can certainly have more discussions about transplant as we continue down this path.

I'm perfectly happy to wait until September when I talk to my doc. But if she's not ready to make an action plan at that point, I'll have to get another opinion. Because every time I'm in the hospital, the other docs I see say it's time to get seriously going on transplant evaluation, but then I see my doc as an outpatient and she's wanting to "wait and see". I do know she knows my history better than anyone, and has my best interest at heart. My NP told me today that I'm at the forefront of the entire department's minds because I'm having these new symptoms (Sparky firing, etc) and they are all trying to do the best thing they can for me. I actually was stopped by 2 cardiologists, an electrophysiologist, and 2 nurses as I walked down the hall, just checking on me and saying hi.

The more I think about it, the more I think my NP may have just been giving me "the company line" about transplants, but maybe she's in the dark about what my doc and her counterparts are thinking. As I've learned from reading lots about transplants, it's wait wait wait wait then all of a sudden it's go go go go!

One other thing that happened today is my doc signed the paperwork for a disabled parking permit. I've put this off for a long time, thinking that I can make it, or having Nick drop me off a the door. But I've decided to put aside my pride and just have it for those times parking is just too far to walk. It really can make the difference me barely making it in the building and then spending the rest of the night paying the price, or feeling fine.

So that's all I've got for right now. I'll keep you all posted on any further developments, but as of right now we're just gonna "wait and see". : )