Sunday, December 25, 2016

The Gift of Pain

Father Prodromos

Father Prodromos has had four surgeries, the most recent one a second repair of his aortic coarctation, which was first treated in childhood. The incision to access this part of the aorta is on the side, underneath the arm. He has lived with chronic pain since that surgery. Here are his reflections on his life now, written on this Christmas Day, December 25, 2016, from the monastery in Cyprus where he lives.

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

Read the story of Father Prodromos' redo coarctation surgery experience here. 

Sunday, December 4, 2016

Urgent Call to Support BAV Research

Introducing Some Special BAV Families 
I do not have any pictures of them to share. Perhaps you can imagine them. 
They seemed to have such active, busy lives. Until suddenly, unexpectedly, they died. "Spontaneous deaths" they were called.

When I heard their stories, I cried. 

Why did they die like this?

We are fortunate that someone looked so carefully inside, seeking to answer that question. In their hearts they found something we at the Foundation have come to know all too well, an aortic valve with only two leaflets.
Human Bicuspid
Aortic Valve

Yes, they all were from BAV families.

They reminded me of  many we have met over the years, fellow travelers along the lifelong journey with BAV.

Before going further, let me explain why they are so special. They are families of mice, engaged in research. They live in the Molecular Genetics and Cardiac Regeneration Laboratory at the University of Ottawa.  Please click on the name to visit this laboratory dedicated to understanding our hearts.

Mice? Yes, they are BAV mice, mice with specific, known, genetic abnormalities. They are the first in a laboratory to consistently have bicuspid aortic valves and so strikingly mirror our human experience.

Just like us, these BAV mice families are far from straight forward. Some family members have obvious BAV, some do not. Some suffer tragic complications and premature deaths, others do not.

Our Doctors Simply Do Not Know Enough Today
Today, so little is known that doctors cannot predict very well how severe the consequences will be in the lives of those in BAV families. This is why some of us discover with time that their predictions turn out to be incorrect.

Professor Mona Nemer and the researchers in her laboratory aim to change that! They are learning so much from these wonderful little creatures and their special hearts and bodies.

The most immediate impact from their research will be the identification of biomarkers, predictive tools that can be used to test for and prevent tragedies, to distinguish between those who will have a more normal life and those who face major risks and need individualized, proactive monitoring and care.

Someone Who Understands 
As I listened to Professor Nemer speak recently, I was thrilled to hear a scientifically-based, compassionate discussion that described the BAV challenge so well. I credit these mice for being amazing teachers, representing us so accurately to these also amazing and talented researchers who seek only to understand, and in understanding, help alleviate human suffering. They have just begun to shed light on the answers our doctors so desperately need. This even includes the labile blood pressure issues that plague some BAVers during their lifetimes.

You Can Help Too!

This is the first research effort that the Bicuspid Aortic Foundation has found so compelling that we are directly fundraising in support of it.

Every 12 seconds, somewhere in the world, a child is born with BAV. Today, I have fresh hope that a new day is dawning, and their future, and that of all those living today, need not be so uncertain.

The most powerful thing that we can do today is support Professor Nemer's work.

This holiday season, 
may you know the joy and peace 
that comes to those who give from the heart,
Creating a Climate of Hope.

~ Arlys Velebir
                          Bicuspid Aortic Foundation