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No Longer the Smelly Girl on the Playground

Apr 25

Posted by: ACHA
4/25/2014 12:04 PM  RssIcon

By Ellen Greenberg

Previously I blogged about how I felt “like the smelly girl on the playground” because the state of my healthcare had declined to such a point that doctors were turning me away for migraine headaches. They would see my incision and basically turn me away.

Unfortunately, my cardiac care was not what it used to be when I was in pediatrics. So this was an extra frustration, especially as I am the one paying the copays. I am also the one taking a total of 15 pills a day. I have what I refer to as my "granny bag of meds”—and that’s exactly what it is only because my grandmother is on a few of the same.

I am happy to report things have changed for the better!

After much waiting and anticipation an adult congenital heart specialist came to my hospital, right down the hall and working with my cardiologist. Alas, my name was called and we were introduced to the new ACHD doctor. Immediately my mother and I felt comforted and that we had hit the jackpot. He had already read my enormous medical history. He took down every symptom, scheduled me for a battery of tests—some I've never even had. We were there for an hour and a half. He even had his secretary assist us in finding the liver specialist that we liked.

A few weeks ago, while having my CT scan of my heart, the ACHD specialist made time to come down and be there for the test, and to say hello. This was a treat to have my doctor there and make his presence known to me by coming in to explain and answer questions before the procedure even started.

A few weeks later we saw a headache specialist associated with the hospital. This came after a 3-month wait. It was worth it, as he too was able to see my whole medical history. I am also allowed to continue receiving Botox as long as I need, and he can inject it for me. Again, my fears were abated, and this was now another doctor who could take care of me as part of a team approach where I receive treatment, allowing me to stay in-house rather than with a different facility.

Lastly, I saw the liver specialist. He walked into the room with laptop open in hand and said, “Is this the Ellen Greenberg?” Whew, big sigh of relief. He was amazed to see how well I looked and, more importantly, that I was alive—as when he met me and went out of town I was on (as he stated) death’s door. He took me off of one liver medication that I no longer need and listened to my symptoms. Again, a long and satisfying appointment, feeling all my questions had been answered, as well as my prayers.

Now after many years without a home team, I have one and know that no matter what, on all three sides I’m in good hands. Especially since they are all part of the same healthcare system and read each other’s notes. This certainly makes me feel less “smelly.”

Ellen Jenny Greenberg is from New York, where she also currently resides. A child life specialist, Ellen has had five open heart surgeries and is obtaining a Masters Degree in Early Childhood/Early Child Special Education. Her congenital heart defects include transposition of the great arteries, ventricular septal defect, atrial septal defect, tricuspid atresia and single ventricle. Ellen sings cabaret regularly and hopes to sing, write and speak for the CHD cause as her journey in life continues.

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