Saturday, September 17, 2016

September 2016 Awareness - Learning about Aortic Coarctation

What Did Sarah Have? Coarctation and BAV 
Sarah would be 20 years old now, a young woman. When I spoke to her she was just half that age and facing surgery. Sarah's Mom contacted the Bicuspid Aortic Foundation when they learned that Sarah was going to need surgery. A bright, athletic girl, Sarah began to have headaches. Doctors found she had high blood pressure, and further searching found both a bicuspid aortic valve and coarctation of her aorta. Sarah's Grandfather also had coarctation, they were not sure if had a BAV or not.

Here is a video from Children's Hospital of Cincinnati that explains what coarctation of the aorta is:

I spoke to Sarah's Mom first, and then she asked me if I would speak to Sarah too. What did I say to this beautiful, brave 10 year old girl before her surgery? I told her that she would be just fine, and that she was very special.  I also remember speaking to Sarah after she was out of the hospital. She did indeed do well, very seriously telling me that she was in the hospital for a very long time. If it is an eternity for adults, what must it seem to a child. They all so desperately want to go home.

I have not heard from this family for 10 years now, but I remember them fondly. I hope Sarah as an adult is experiencing all that life should hold for a bright, active young woman. I hope she has wonderful doctors and keeps her check up appointments faithfully, both for her aorta and her BAV.

Father Prodromos and Coarctation

More recently, Father Prodromos sought help from the Bicuspid Aortic Foundation. He was just a tiny tot when he had his first surgery, for coarctation of the aorta. In the intervening years, he has had three additional surgeries: BAV replacement, prosthetic valve and aneurysm replacement, and repeat surgery on the coarctation site.  Father Prodromos' last two surgery experiences are described at the links below.

Father Prodromos - My Journey of the Heart

Father Prodromos - My Journey of the Heart Continues

It is very common for those born with coarctation to also have BAV. May these accounts of those needing help first as children give hope to those today who must cope with this, no matter what their ages.

Sharing our lives
Together We Are
Creating a Climate of Hope.

All Best Wishes,
Arlys Velebir
Bicuspid Aortic Foundation

1 comment:

  1. As I see it, one of human’s most common weaknesses is obliviousness. We tend to forget even the greatest gifts life has given us throughout our journey in time. So, it is no wonder that I honestly thank God for an unusual gift I was given by His all-caring and fatherly providence: pain!
    Pain really is a mystery. Why some people find themselves in chronic pain after a surgery and some not? Why some people struggle all throughout their lifetime against this uninvited friend and some never even get the chance to meet him? The answer is never to be answered. One needs to find his own, very personal way to get along with the lifelong reality of pain. And for me, St Paul has portrayed the most blessed approach to this phenomenon. He writes:
    “Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh… Three times I pleaded with the Lord to take it away from me. But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses… in hardships… in difficulties. For when I am weak, then I am strong.”
    Mrs Arlys Velebir was the one to correlate this verse by the Apostle to my state. She did that when at my first year’s anniversary after my surgery in 2015 I wrote to her the following about my pain: “every day we all face what our Lord allows to come in our lives, trying to make the best of it for the benefit of our eternal existence: perfect love to God and our neighbour under any circumstances. So, glory be to God for all things!”

    Yes, I would forget about that wonderful miracle that took place in the operating room in January 2015. If you read my story on the BAF’s site, you will easily understand that what happened on that day was nothing usual. If I was in the hands of any other surgeon on that day it is really doubtful whether I would be now sitting and writing this. Not to mention that I would have never even made it to surgery. So, I had to remember; I have to always remember. But for this I needed this tiny little thorn. To others such a thorn might feel like a sharp blade. Not to me. To me is a wondrous reminder. It constantly reminds me that gratefulness is human’s most noble expression of love and understanding. I am so very grateful for this friend I was given, to walk along with him the remaining of my life and every single day to acquire the most precious knowledge from my relationship with him: “when I am weak, then I am strong!”

    My dear friends, I have undergone 4 open-heart surgeries up until now with the possibility of even more to come. As the second anniversary of my last surgery is approaching, this is my message to all of you for new year: accept pain, every and any kind of pain -spiritual, sentimental, psychological or physical- with one thought: Pain makes us human. And only human can love. Therefore, the more we hurt, the more we love; and love is our destiny.

    I trust that since this comes from someone who really knows what pain is, it should then count a little something to you!
    God’s love be with you all. Happy New Year!

    Father Prodromos