Journey of the Heart

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 coul d 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

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