Wednesday, January 29, 2014

Living with a Dissected Aorta, Good and Bad News, Depression and Hope.

I am so confused and can't figure much of this Marfan challenge out.

Some days I could care less about my dissected aorta.  Usually on those days the sun is shining and I go for a bike ride, keeping my physical exertion to a minimum but distracting my mind from the torn vessel from inside my chest.

Other days, like today are rainy and generally blah.

Yes, this is all perspective, I remind myself.  I could have been born in a much poorer place of the world and be dead now because of a lack of access to hospitals.  I could have been born during the Inquisition period too, or any other horrid point in history.  Instead I am here today with hot water, electricity, Facebook and grocery store food.  So I should be thankful instead of gloomy.

But I am gloomy.  And it didn't help that I awoke this morning to an article in my email inbox about the FDA approving Medtronic's thoracic stent graft system for people like me living with a dissected descending aorta.

Ugh.  The article starts out in the first couple sentences stating, "Expand Treatment Options for Patients with Dangerous Tears in Upper Segment of Body's Main Aorta".  Hey, my tear goes all the way to my feet so is that dangerous times three for me? Ugh again.

Then the article talks about my condition as a "serious cardiovascular condition associated with high morbidity and mortality in which the upper segment  of the body's main artery has become torn along the innermost layer of the vessel wall."

Using the words, 'morbidity' and 'mortality' is such an endearing writing strategy for those of us living with dissections.

I am so glad the medical profession is working to find solutions.  Without such I'd be dead now of a ruptured ascending aorta.  And I am not wanting to live like an ostrich with my head stuck underground so I won't see or hear (or read) the 'fear' out there.

Yes too I am so thankful for all the blessings in my life.

But chronic pain is real and so is fear of dying way too early in life from a dissected aorta.

I know I am not alone in this struggle.

Hopefully by writing these brief words, someone else out there suffering in a similar fashion will too know they are not alone.

O.K., now that I have had my pity party I will finish reading the article.  Maybe it ends in a note of hope.

1 comment:

Anonymous said...

Hi Kevin, I just wanted to reach out as I don't find many blogs that cover Martan Syndrome, but couldn't find your email. If you could, please email me at mtrucillo(at)recallcenter(dot)com. Thanks!