still waiting for my heart monitor to arrive...

The darn thing was supposed to have been shipped directly from a diagnostics center in New York at the end of last week - yet I still haven't received it. (I do realize that it's only Monday...) However, I think tomorrow I will put a call in to my cardiologist's assistant to see if there's a tracking number we can reference. Imagine this - I can't wait to get the darn thing ON so I can get this 4-6 weeks of arrhythmia monitoring over with.

I saw a new doctor today today, as I need someone more local that can act as my liaison between my NYC doctors, and the local hospital up here in CT. Once orders are faxed from one of my doctors in NYC, to my new doctor in CT, and then over to the local hospital, I can go in for my "admittance orientation" and I will finally, yes finally, be enrolled/admitted to the local IV clinic, yay!! A little bird (well, a receptionist) told me that they give you a private room. What better way to make an infusion pass than with a good book or an hour in front of the TV? I figure it's a free pass to be lazy... or to "relax"... if you can call it that. =)

I was told I would get the meds via drip, (as opposed to a manual push, which my doctor in NYC does) so they can monitor the speed of the infusion with an IV pump. Magnesium sulfate can be dangerous if it goes in too fast, so connecting the bag through a pump releases your dose evenly over a specific period of time. For me, an infusion via a pump takes 60 minutes once I'm hooked up. My guess is the whole visit will end up taking 1.5-2hrs start to finish.

I'm worried about how my skin will react after being exposed to the adhesive from the electrodes for weeks on end. However, a friend of mine who is a cardiac nurse at the Mayo clinic suggested I purchase a bottle of "3M Cavilon Barrier Spray" from an online medical supply store. I've had problems in the past due to my sensitivity to medical tape, etc.

So February 6th is a big day for me. I head back up for my 6 month post-op appointment at Columbia Univ/New York Presbyterian Hospital. Although we won't have heart monitor results to talk about - as I will still be "wired", I'll be having another echocardiogram. I am SO anxious to see the tissue growth on my implant. My doctor said that at 6 months, sometimes it looks like a stripe down your atrial septum. I do love getting news that things look good - yet always get nervous during those first few minutes when my doctor is running the probe over my chest and looking at the screen. I think I probably hold my breath until I hear the all clear "looks good so far"!

If you have a few minutes I encourage you to take a look at the website for my friends at Shevet Achim in Jerusalem. They have a handful of Iraqi children with congenital heart defects (CHD) that have recently undergone surgery. This organization is amazing, and is always in need of support. www.shevet.org

Unfortunately I have to turn down my invitation to attend CHD Lobby Day 2009 in Washington DC this year. It's taking place on February 9th, and with having just taken 2 wks off from work and being "wired" I'll be unable to attend this time around. Fingers and toes crossed that I'll be able to lobby in 2010!!

Do you know what February 14th is? Valentines Day? Well... yes, but no... It's Congenital Heart Defects Awareness Day!! Make sure you wear red to show your support. Although, I do realize that if you wear red most people will assume that you're celebrating Valentines Day. Sooooo wear a CHD button!! You can get a mended heart button by visiting www.chdfamilies.org and looking at their online store. I have one, and so should you. =)

Okay, I'm stepping off of my soapbox and going to bed.

good night !!

p.s. I had my very first artichoke over the weekend, and loved it.

back to the real world, Rachel... wake up

Yes, it's true... back to reality this week.

I'm awaiting the arrival of my new heart monitor, which I'll be wearing 24/7 for a while. Fun times, I tell ya, fun times! I have a doctors appointment on Monday, which should get things rolling with my admittance to the local IV clinic. Ahhhh I'm almost due for IV meds and I can SOOO tell. Want to know how? I start getting that crazy visual aura again, fatigue, and headaches. I'll find out Monday what day I'll be scheduled to go to the IV clinic for my meds.

February 6th I will be 6 months post-op. I actually have my 6 month appointment on that exact day. Hopefully I'll have a few more answers regarding what we'll do about my arrhythmia. However, I'm not going to get my hopes up too high that we'll have full answers, because I won't have had the heart monitor on for very long at that point, and my doctor won't thoroughly go over the results until I've had the darn thing on for a month.

Okay, so here's more pictures from the amazing vacation I just went on. =)

tapas in Barcelona, Spain

inside the Colosseum in Rome, Italy

the pyramids at Giza on the outskirts of Cairo, Egypt

riding a real live camel in the Sahara Desert !!
(I'm not really in a town, just in the middle of the desert...)



donkey - main form of transportation in rural Egypt



temple of Poseidon in Cape Sounion, Greece
(on a cliff overlooking the Sea)



the Blue Grotto in the Republic of Malta



spices at an outdoor market in Izmir, Turkey

I'm dreaming big and trying to live a life full of adventure. You never know what tomorrow brings, so live each day to its fullest!

proof that I visited 6 countries in 2 weeks

... okay, make that 7 when you include the Vatican.

We had a great time. However, I am happy to be home. This was one of our most memorable trips yet. Who knows which inch of the globe we'll hit next.

Barcelona, Spain (Gothic Quarter)

Rome, Italy (Colosseum and Vatican)

Athens, Greece (Erectheum at the Acropolis)

Izmir, Turkey (Agora ruins and carpet shop)



Cairo, Egypt (pyramids of Giza and Sphinx)



Republic of Malta (villages of Dingli, and Marsaxlokk)

Aside from experiencing arrhythmias, which has become the "norm" for now, health-wise, my trip went smoothly.

departing Asia this afternoon, & entering Northern Africa tomorrow morning

I haven't had the luxury of high speed internet since last week. Otherwise, I would be on here more often, writing about my trip and posting pictures. Tomorrow I'll spend the day in Giza and Cairo, Egypt. We'll be in Egypt for a few days, and then head up to the island nation of Malta, before returning back to Barcelona, Spain.

So far we've been to Italy, Greece, and Turkey. I can't say that I have enjoyed any one more than the other, as they have all been so unique. Turkey stands out though, because it was so different than anything I had experienced before. Their mosques were beautiful, and so were the prayer chants that were played throughout the city of Izmir on speakers. The experience was surreal. The food in Greece was better than I expected, and the Colosseum in Rome, Italy was far more breath taking than I ever imagined. I think the biggest highlight to our time spent in Greece, was our venture up the coast to visit the temple of Psoiden, which sits upon a cliff overlooking the Sea.

I've had lots of time to relax during our days at sea, and though this has been an adventure, I don't feel "worn out". My heart has been acting up a little, with arrhythmias bothering me at night as I try and fall asleep. Other than that, I feel great. (Although it's been annoying having to wait for the beep of my wristwatch, and stay on an Eastern Standard Time medicine schedule!)

I still can't believe I'm out here. It reminds me that you have to dream big. This experience has also brought comfort to all that 2008 brought, and highlighted the importance of savoring the moment, living life to its fullest.

I promise to post pictures once I have highspeed internet again.

Rachel

hello from Spain

It must be a miracle...

... that we made it from Madrid to Barcelona this evening via plane. There was an employee strike this week with Madrid's air traffic controllers. They only had ONE outbound runway active today. I won't go into detail, but we managed to get a seat on shuttle flight bound for Barcelona. Oh the stress!

Here are some pics from the evening. Heck, it's almost 11:30pm here. I hardly slept a wink on the plane, so although it's only about 5:30pm EST, I'm ready for some sleep!

produce market

wine and cheese market in the "Gothic Quarter"
(I believe I bought jam or honey here, last year)

tapas !!

I'm going to ride a camel...

...over the Giza plateau in Egypt, with a view of the pyramids and sphinx. I still can't believe it!

The bags are packed, our house sitter will be here tomorrow, my iPod is loaded, my medical supplies are all accounted for, and the passports have been pulled out of the safe.

Today I went out and bought the Microsoft Office suite for my new MacBook, and a new digital Canon camera. In addition to books and magazines, I have quite a bit of technology to keep me occupied during our flights and whatever down time we may have.

I'll post blogs when I can. Here are our stops!

• Barcelona, Spain (we were actually in Barcelona in January of last year as well)
• Civitavecchia and Rome, Italy
• Piraeus and Athens, Greece
• Ephesus and Izmir, Turkey
• Alexandria, Cairo, and Giza, Egypt
• Valletta, Malta

Although we'll be on the go, I hope to come home feeling refreshed, and ready to start 2009 with positive footing.

Happy New Year!

Rachel