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Creating a Climate of Hope, an Atmosphere of Caring, and Information for All

My Journey of the Heart - Father Prodromos Nikolaou The story of my way to aortic aneurysm operation First Surgery Before Age 3 I was born in the summer of  1978. I first saw the light of this  life on the island of Cyprus, and  before receiving even that first  infanthood knowledge of our  world, I was diagnosed with the  first abnormality of what it came  to be understood years later as a  genetic syndrome, the aortic  disease. I had coarctation of the  aorta which put me on the  operating table before  completing the third year of my life. I had that first operation  in Killingbeck Cardiac Hospital for children in Leeds, UK. The  passage of time proved that very first procedure a great  success, especially for the conditions of that early time  (1981). At 15, Something Was Just Not Right with Me I was living a very normal life, being as active as any child  of my age till the age of 15. Joining a junior football team  of my town and trying to keep up with its normal every day  training schedule, I soon realized that for some reason  that was impossible. After a few weeks of excessive  efforts to prove myself capable to retain my position in the  team I came to the unfortunate position to inform my  parents that something was just not right with me. I was  getting tired very easily at training and it was impossible to  keep up with the pace of the rest of my playmates.  I once again visited my cardiologist. Another abnormality  of my aorta was revealed. My physician diagnosed me to  have a bicuspid aortic valve with moderate regurgitation. I  was therefore not allowed to continue football training and  I had to be generally very careful in getting too tired from  physical activity. Training I did give up, my parents would  not allow me to continue anyway, but of course at that age  it was impossible to withdraw from what is known to be a  normal teenager’s life, with sports and all kinds of games  which involve intense physical activity. I will never know  whether that contributed to the fact that 5 years later I had  to undergo my second surgery. This time an open-heart  operation....  A One Way Decision Beyond my Cypriot nationality, having a Greek-English  mother, I was also exploiting the privileges of having a  British nationality too, one of which at the time was fully  covered health care. So, I was being followed up by the  cardiologists of St. Mary’s Hospital in London Paddington.  I was 20 years old and studying in London when replacing  my aortic valve was presented to me as a one way  decision. My valve regurgitation was extremely severe.  One way decisions are indeed easy. They don’t set you in  the unpleasant procedure of having to choose between a  multitude of options, most of which usually you don’t even  understand.   And so, once again, I found myself on the operating table  in April 2000. I have to admit that this second experience -  not that I remember anything from the first one - was  extremely difficult. Until now I can’t say why I had such a  hard time. I would imagine that the fact of developing  pyrexia (fever) after my operation must have worsened  the situation significantly. I was in great pain and even had  to ask for morphine in order to get an hour of sleep or to  relax, even just for a while, from my continuous fight with  pain. I stayed in-patient for 10 days. Going home did not  mean that I was feeling much better. For 2 months I was  taking Codeine, Diclofenac and Paracetamol (Tylenol).  My Life at Age 25, Thinking Everything is Fixed Three years later my life was already set in a completely  different perspective. I became a monk in a Greek  Christian Orthodox monastery up in the mountains of my  country, Cyprus. I was now living a calm and peaceful life,  enjoying the beauty of God’s creation right in the very  heart of a pine forest 1000 meters above the every day’s  noisy reality. I was never informed that I was still under  the risk of presenting yet another abnormality on my  aorta, an aneurysm. Myself, I was never the kind of a  person that would go searching and studying about his  health and how to preserve it. The truth is that, as I said, I  thought that everything was now fixed in me and  visiting my cardiologist once a year was just a matter  of routine. New Diagnosis in 2007 – Aortic Aneurysm In 2007, however, I was once again diagnosed with a new  problem, an aortic aneurysm. I did not realize at the time  the potential of having to undergo yet another open-heart  surgery. After seeing the change of my aortic root’s  diameter on echo, my physician ordered a CTA scan and  a transesophageal echo which showed my root’s diameter  4.8cm. My follow-up appointments became now more  frequent. I would go twice or even three times a year.  However, no change was found during the following 6  years. Another CTA in the end of 2012 showed no  significant enlargement of my aneurysm. The diameter  was still 4.8-4.9cm.  Searching for Answers A few months later I was given a book on how to handle  Coumadin. There I read that taking anticoagulants could  harm people with aneurysms. That was a wrong  statement, but at the time I didn’t know it. That finding for  me it was obviously a serious one and I felt that I had to  find out more about it. Going on the internet is something  that monks don’t usually do. So, I had to ask my Abbot’s  opinion on whether he also considered my “finding” to be  important and if it would be helpful to search on the  internet about it. He said that it wouldn’t do any harm to  see what we could find. And so I started searching. I was  trying to find out if and how Coumadin harms people with  bulged vessels and to my great surprise I came across a  whole new world of information, studies and findings  about when an aneurysm is considered to be dangerous  for dissection and rupture. Until then I knew that anything  smaller than 5cm on the root was not suggested to be  repaired, especially when it came to people who had  already undergone an open-heart surgery. A redo would  be considered only if the aneurysm started to grow bigger  than 5cm. That theory though was not right after all and  according to my findings surgery for me was considered  necessary at the diameter of 4.8 cm. Firstly I read the  article on the website of Valley Heart & Vascular Institute,  Risk Stratification: Is My Aneurysm at Risk for Rupture?  Then I read the study by Davies et al, Novel Measurement of Relative Aortic Size Predicts Rupture of Thoracic Aortic Aneurysms. A multitude of questions arose in my mind. I needed to speak  or contact someone who had respectful experience in the  field. And so I founda a webpage where patients could  directly ask doctors about their problems. There they had an  aneurysm forum, and so I palced a couple of questions. It all  started then. A kind lady who went through a difficult  experience hereslef, after giving me great information about  my condition referred me to the Bicuspid Aortic Foundation  and specifically to Mrs. Arlys Velebir, the chairman, who she  personally knew. Mrs. Arlys became my guardian angel, a true guide  throughout an unprecedented course which I could never  imagine that I would ever follow in my life. Firstly she  introduced me to Dr. Jason Sperling who kindly answered  a great series of questions I had. We were in daily contact  for a week and his answers gave me a clear image of my  condition. Now, I knew that surgery was once again a one  way decision and that made things much easier. One  thing was still under great consideration: where should I  have my operation. I needed a surgeon who would not  only be able to fix my aneurysm, but who would also be in  the position to do whatever he considered necessary so  as to avoid the possibility of yet another surgery in the  future. And that surgeon I found in the person of Dr. Sharo  Raissi. Dr. Raissi accepted to speak with me on the phone and  answer any question I might have had. At that time I didn’t  know anything about him and his experience. I just trusted  Mrs. Arlys’ unreserved confidence in him. So, we spoke  on the phone, and I realized that I was speaking with  someone who not only had a great and unique experience  in the field of aortic surgery, but also had the gift of  transmitting the feeling of safety to his patients. He was  confident enough to let me know in a straight forward way  that I needed surgery and at the same time reassure me  that my surgery could be done with great lifelong success  without any significant difficulty, all throughout the  procedure of the surgery itself as well as with the recovery  progress. I knew from that very first phone conversation that Dr.  Raissi was the only one who could bring off the task of my  surgery. And furthermore he was so unexpectedly kind  and warm that I felt if I went all the way to USA, something  beyond my imagination at the time, I would have a real  family waiting for me there. And so I was right.  Now, words would never be enough for me to express my  feelings and describe the experience of my operation and  my relationship with Mrs. Arlys and Dr. Raissi. It might  sound excessive (however, coming from the mouth of a  monk it should be trusted), but I would repeatedly go  through the same experience over and over again just to  relish the beauty of the fellowship of these two people. Discovery of Prosthetic Aortic Valve Strands The operation had its surprises, too. My St. Jude  mechanical valve was found to have a serious quantity of  fibrin strands in it which could easily cause me a stroke at  any time. So, my aortic valve was replaced again, this  time with a bovine one.   Recovery As far as my recovery progress is concerned I was  astonished to see myself feeling strong and almost back  to normal from day 4! I could take long walks from the  very first day of my discharge, just 4 days after my  surgery, without feeling seriously tired or even  uncomfortable. Dr. Raissi’s suggestion of avoiding pain  killers from the first day after my operation was proved to  be unexpectedly helpful in regaining my strength and  retaining the aliveness of my spirit. I was only taking  Tylenol and after 3 weeks I felt that I did not need them  anymore.  My surgery was  performed on the  21st of May 2013.  On the 4th of July I  was back in my  monastery and  already fit enough to  follow straight away  my normal daily  schedule: waking up  on 3.30am for a 4  hours church service, carrying off my long daily duties of  taking care of all our visitors, attending all the church  services of the day (which means long time standing) and  keeping up with my prayer and reading schedule at night  till 11pm. My relationship with Dr. Raissi and Mrs. Arlys did not  come to an end after my departure from USA. They still  take care of me as they did before my operation and  during my stay there. We are in continuous contact and  Dr. Raissi instructs me on everything that concerns my  overall health whilst Mrs. Arlys continues to retain the  position of my sweet guardian angel, caring and helping  me in everything I need.  I have learned through my experience that in every corner  of this world one can find a shelter and a helping hand  guided by the divine providence. I believe that God has  chosen Dr. Raissi to offer the whole of himself to his  neighbor, using his inspired and excellent scientific skills  as well as with the noble content of his heart. He is a  heart surgeon and a heart consoler. The combination of  the two heals the whole man, body and soul. And that is  what I have experienced through my relationship with him.  I am a weak person. As a monk I am also a poor person. I  have nothing to offer to show my  gratefulness to those people who  gave me the possibility to keep on  living as a healthy person with the  certainty that everything that was  needed to be done was  accomplished in the most perfect  way. I have nothing to give apart  from my prayers which spring out  from the depth of my heart. I hope  and trust that God will give them  much more than I would ever be  able to offer. God bless them and  all those who made all this possible  for me.                 - Father Prodromos
The Search for Help
How do those with BAV/TAD find help? It has been a great concern of mine since we desperately searched for help for my husband in 2001. It means a great deal to us at the Bicuspid Foundation when we hear from both near and far - people seeking information and support. And still, we remain concerned about so many that may not be reached. One day, an email came to us from a young monk, living high in the mountains of Cyprus. At first it seemed that our support would mainly be sharing medical information and perhaps exploring options offered in Europe for those with BAV/TAD. In time I learned that Father Prodromos had been directed to us by someone very special to me, who had come far too close to death because of a failed BAV surgery. This touched me deeply, and as his journey unfolded step by step, it comforted me a great deal to see how he was guided to the answers and help he was seeking. Father Prodromos’ experience has confirmed our hopes for those with BAV. His life today, free from the threat of aortic rupture and injury from strands and pannus, is an expression of the meaning of seeking and finding. If a monk living a secluded life on the other side of the world could find information and make decisions that led to exactly the surgery he needed and the hands that could do it expertly, others can receive help too. May they be moved to search with the same diligence.          - Arlys Velebir,            Chairman, BAF
BAF YouTube Channel Blog
Ready to Fly Home

Mission

Accomplished!

The ideal experience and outcome of a partnership between surgeon and patient.
First Meeting in Person

on the eve of surgery

There were many decisions to make, many doors that needed to either open or close. We went through those many decision points together, finally meeting in person on the eve of surgery. By then many doors had opened, and I was confident that the aneurysm would be dealt with perfectly the next day. But one thing had been troubling me, and that night I remained burdened about it - the 13 year old prosthetic valve inside his chest. I had spoken to both Father Prodromos and Dr. Raissi about it. TEE during surgery would be the best possible means of finding strands and/or scar tissue (pannus), and if these dangers were there, I hoped it would be so obvious that there would be clear justification to replace it. During surgery, we were told by the nurse at one point that the prosthetic valve was still being evaluated - and I knew instantly there was something questionable about that valve. Time stood still until the next update, when the nurse said the decision had been made to replace the prosthetic valve, and it was being removed as she spoke. In that moment, I knew why this young man had come so far to find help.  My last and most earnest request had been granted.  Father Prodromos’ brain would not suffer the fate that had injured my husband nearly 8 years before. In 2001 a cardiologist was specially brought into surgery to evaluate the TEE images of my husband’s prosthetic valve. There was no obvious justification for removing it. But just 4 years later, strands on that mechanical valve went to his brain, severely injuring him. Based on learning from my husband, others with prosthetic valve strands have had their valves removed - but until now, all of them had a stroke first. Living with brain injury in our home for nearly 8 years has given me many reasons to try to prevent strokes in others. Finally, with Father Prodromos, we have done that. Father Prodromos is still a young man, with much to accomplish in his life. I am privileged to continue to walk this BAV journey with him, and with all those who need help with the complications they face along the way.                                                  - Arlys Velebir,   BAF Chairman
Pictures from Surgery
A Mother’s Love

Father Prodromos’

mother came with her

son from Cyprus to

the US for his surgery

A Fond Farewell
Dr. Sharo Raissi, Lia Nicandrou, Arlys Velebir, Father Prodromos