Tuesday, May 22, 2012

Another Bullet Dodged!

May 22, 2012

Well we dodged another bullet for a while. Sometimes it feels like we are playing a game of Russian Roulette, never knowing when we will find the bullet, but for now, we have dodged the bullet once again. 

Both ECHO's were stable, but due to issues unrelated to Marfan's we are making minor medication changes on both of them. 

For my daughter, it will likely have no effect (unless we run into an allergic reaction), but for my husband it COULD have an adverse effect so we will do some extra monitoring to make sure we don't have any issues. He also has heart disease & high blood pressure on top of the Marfan's (a wicked combination) so we have limited options what we can do for medication changes, so this will be a bit of a tight rope act. 

So for the most part, another routine check up, and for the hubby, back in 6 months, for my daughter, back in a year... YEA!!!!

Monday, May 21, 2012

May 21, 2012

This week will be ECHO's & check-ins with the cardiologist for my husband & youngest daughter. It will be either a routine week or it will be one of those weeks that turns our lives upside down, the question is which?

For those new to Marfan syndrome, a little background. Marfan syndrome is a genetic disorder of connective tissue, the tissue that strengthens the body's structures. Connective tissue holds all parts of the body together and helps control how the body moves & grows. Disorders of connective tissue affect the skeletal system, cardiovascular system, eyes, and skin. Because the condition affects many parts of the body, it can cause many complications. Sometimes the complications are life threatening.

Marfan syndrome traits vary from person to person, even in the same family. Some people who have the condition have many traits, while others have few. The most serious complications of Marfan syndrome involve the heart and blood vessels. Marfan syndrome can affect the aorta, the main blood vessel that supplies oxygen-rich blood to the body. In Marfan syndrome, the aorta can stretch and grow weak. This condition is called aortic dilation or aortic aneurysm. If the aorta stretches and grows weak, it may tear or burst and leak blood. This condition is called aortic dissection. It's very serious and can lead to severe heart problems or even death.

Luckily we caught ours before it got that bad, and with good monitoring & in my husband's case, aortic valve replacement surgery in 2000, we have avoided the worst case scenario. It's always in the back of our mind, but we are always aware the danger can arise at any time.

As part of taking care to avoid the worst, my husband has exams done ever 6 months due to him having a family history of heart problems in addition to the Marfan's, and the rest of us are on every year. Now comes 2 of those visits over the next 2 days. Wish us luck that the news is "No change, see ya next time!"

Monday, May 14, 2012

Our Marfan Story Begins...Again!

In 1994 my 31 year old husband Daniel was diagnosed with Marfan Syndrome, one year after we were married. He had his aortic valve replaced in 2000 with a St. Jude valve. Because of other medical issues unrelated to Marfan's he could not work any more and has been on disability ever since. His repair has remained stable and he is doing well at age 48.

After many twists and turns of odd symptoms and a misdiagnosis of a related condition, I and several children from an earlier marriage (unrelated to Daniel) were also diagnosed with Marfan's in the fall of 2011.

The odds of having Marfan's is 1 in 5,000. The odds of TWO undiagnosed Marf's meeting and marrying is 1 in who knows how many... Yet, we found each other!!

As we adjust to the diagnosis, our lives are now changed and will be taking a new direction. Follow us along as we see where this uncharted path takes us...