Is My Aorta Still Dilating? #Marfan #Aorta Dissection

How many times during the day do I ask myself this very question?

Flagler Hospital's GE Lightspeed CT Scan Unit

Everytime I reach to hold an object or lift something, my mind shifts to the wondering and questioning mode. Whenever I strain, holding by breath, even for a second I wonder if the now very thin walled vessel will hold or pop. Looking at my teens and my wife the same question flashes through my mind. What is in store for my aorta?

Even watching the few television episodes I waste my time on, the rupture of an aorta is always lurking somewhere in the background. Such was the case when we were watching the season finale of Revenge and the character Dechlan died of an aorta rupture. Another character, Nolan (explaining through tears to Dechlan's brother Jack) referred to the event as a rupture of the 'aorta artery', leading me to believe the script writers had to include the term 'artery' because most viewers would have never asked if their aorta was dilating or unhealthy, and for that matter even know the aorta was an artery, let alone the largest artery in our body.

So every so often my cardiologist also begins to wonder what is happening in my thoracic cavity (chest) and orders a CT Scan event, complete with iodine for better contrast.

I really like Flagler Hospital in St. Augustine. The stormwater pond is a marvelous example of as to how truly green infrastructure should be designed. Birds from around the world come to Flagler Hospital, not of course for the medical expertise but because the big stormwater pond has plenty of shallow water roosts where the two wings can perch, poop and wait for a fish to swim by. I see roseate spoonbills, all types of herons, the goofy anhingas, ducks galore and more. Moreover, the hospital boasts some of the loveliest living walls around, flowering vines releasing their lovely fragrance that unfortunately has to mix with the exhaust of the laundry vents.

Flagler's staff are always so welcoming and friendly (and cute too!). Most are experts at cracking the lamest jokes in an attempt to turn my dour smirk into a smile.

Last time the inside of my elbows looked like a chickenpox battlefield after the nurse couldn't find the vein. Finally they had to get someone else to try. This time the nurse got the IV attached effortlessly and without any pain, making me very happy and keeping my blood pressure at reasonable levels.
Being a Marf is always a challenge for many reasons. The first reason is always having to explain just what a 'Marf' is, the whole connective tissue disorder and aortic dissection thing. I always know at what point in the story their eyes widen to the size of a raccoon's and the words, 'wow, you are so lucky to be alive!' are uttered.

After determining my kidneys are borderline strong enough to handle the contrast dye they tell me about what the IV's iodine rush will like. One never forgets the warm flush as the iodine flows from the arm into the heart down the aorta into the abdomen area, very similar to the wonderful feeling of finally finding a toilet a couple hours after eating a big plate of chopped, steamed okra. I always manage to hold it in, but notice the retractable bed is covered in plastic causing me pause to think of others not so disciplined.

The 'nitro' pill is like afib in a bottle. Because my pulse usually stays around the low 40s, the CT techs always administer nitroglycerin either before or during the test. This time they used a spray, telling me to lift my tongue before they coated the inside of my mouth with a fine mist that makes your heart stand up, salute and sing the Star Spangled Banner.

GE should use a larger font for the 'Do Not Stare at the Laser' warning sign placed adjacent the unit's laser opening. I found myself staring over and over again at the opening and sign trying to read the text. Then there are those ugly little green and yellow heads with noses as long as Pinocchio's that light up when you are supposed to breath or exhale. It is so much easier to interpret to color of the evil grinning heads than understand what the CT techs are saying over the very crackly and way too loudspeaker.

All the stretching and yoga poses I've practiced paid off nicely, for when the CT Techs placed my arms straight out above my head so I'd fit through the CT unit's orifice, the techs did not have to tie down my wrists and the IV stayed in place. The entire test took about twenty or so minutes and, except for the hospital gown flapping about, went smoothly.

The CT Techs and nurses were speechless when I asked, after the test was complete, if I could take a photo of the CT Unit with my Ipad for the Marfan Blog.

Another CT Scan completed I walked down the hall of the lovely hospital, admiring the beauty of the courtyard's waterfall and stunning planted gardens, finding a place to sit and make sure I was not to dizzy to walk out.

My cardiologist will read the scans and compare to the last set of test results and I've an appointment to discuss the findings with him next week.

In the meanwhile, I'll still be asking myself the question, 'I wonder if my aorta is still dilating'. Such is the life of someone who deals with a connective tissue disorder such as Marfan Syndrome.

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