The Big 3-0!

I turned the big 3-0 on Sept. 2nd. It didn't really bother me too much. It was actually a pretty great day. I worked half a day, enjoyed lunch with a coworker, and shopping at the mall and DSW. My mom had me a cake when I got home. Josh took me to dinner that night at Ristorante Capeo. The risotto was excellent! I got to wear a fun little red dress that I borrowed from Karen and felt thirty and flirty!

Josh also threw me a birthday party for me and Andrea at YaYa's on Sept. 9th. The food was fabulous, and I had a great time!

Picture of the Yummy Cake!

 The 9/2/81 duo!

We were done with dinner and everything was going so great. Then I coughed really hard and my heart started racing. I tried to breath slow and calm it down, but it was not working. One of my friends took my heart rate and it was 160 bpm. It felt awful, like my heart was trying to jump out of my chest! I knew I had to go to the ER so Josh and I drove to AR Heart Hospital and they took me back within ten minutes. They ran several tests and asked lots of questions. The doctor decided I was in Atrial flutter. He then put a medicine in my IV that metabolised within seven seconds. This caused me to be short of breath and feel very flushed.


Here's a picture after my heart rate was down.

It was all very scary! I didn't know exactly what was wrong with me. This was a big dose of reality that I am growing older and Marfan Syndrome is not too kind to the aging. The doctor was not sure what caused the Atrial flutter, but low potassium could be one cause, and mine was low. Another cause can me Mitral Valve Prolapse, which I have. I will follow up with my cardiologist this week so we can make sure I am ok. I do have to say that the doctor and nurses at AR Heart Hospital are excellent and made me feel comfortable.

For right now, I am taking it easy and counting my blessings! I am trying not to focus on the negative and the what-ifs. I know that God has a great plan for my life and it does not involve hospitals.

Marfan Trial Nearing the End!

As many people know, I have a genetic connective tissue disorder called Marfan Syndrome. This disorder affects my whole body, but the most dangerous organ it affects is my heart. It can cause my aorta to become enlarged so much that one day I might need aortic valve replacement surgery.

I was enrolled in a clinical trial from 2007-2010 that looked at two blood pressure medicines (Losartan and Atenolol) and how they can affect the aorta in Marfan patients. Losartan was tested on Marfan rats and it showed that it decreased the aortic size and helped regrow muscle. This is a very exciting possibility for the Marfan community. There is no cure to Marfans, but this could definitely be a more effective treatment than a traditional beta blocker that slows down your hear rate just enough to hopefully manage the aorta. The trial finally has all of the participants it needs and will be ending in 2014! I am anxiously awaiting the results!

Although I believe I was on atenolol during my trial which made me tired, I was still happy that I participated. I want to help advance the research for Marfans so more fathers, mothers, sisters, brothers, etc. don't die early from this disease like my dad did.

If anyone would like to do more research on Marfan Syndrome, the National Marfan Foundation website is www.marfan.org.

My Resolution Words

Last December, I was listening to Klove and got the idea to make up Resolution Words for the New Year in lieu of actual resolutions. These are words that you can remember every day to help you focus on what you are trying to achieve. Some examples can be "dream, achieve, joy, etc". My resolution words for this New Year are "simplify and focus". I want to simplify my life and be able to focus on what's important at the moment. In the past, I have put way too much on my plate, and worried about the next activity. I want to be able to focus on the moment and really enjoy it whether it be work, exercising or playing with my daughter. Let's hope I can stick to this because it seems to be working for me so far. :-)

Humbled by Homeless

Tonight I had the opportunity to help at at Canvas Community downtown. A warming shelter has been set up this week as the temperatures drop in the teens overnight. It was great to sit down with the people and hear their stories. There were many sad stories and some stories of hope.

I met a 19 year old girl that lost her job, was beaten by her boyfriend and was brought to the shelter. She has no family to live with and has sickle cell anemia. Her sister has been trying to donate plasma so they can afford to pay a deposit for an apartment. She has been looking for a job, but has not had any luck.

I also met an elderly man who recently moved to NLR, and his SSI check was not sent to his new address. He is not able to pay his rent and utilities for this month and will probably be evicted. It was so sad as he assured me that he didn't want to be homeless and was doing everything he could to get the needed money. There was nothing I could do for him, but apply him for food stamps.

On a positive note, I did help a guy pick out an outfit for his interview tomorrow with McDonalds. He seemed like a nice guy, and I hope he gets hired. I also referred several people to the MAP Program at UAMS to help with low cost prescription drugs and doctor's copays.

It's so easy to see these people on the street, pass them by and go on with our lives. But when you get to talk to them, you see they have feelings, dreams and wants too. They have stories that will break your heart and make you realize how lucky you are to just have a bed to sleep in.