I've had every intention of publishing the draft posts about September through December that I've started and never got around to. Alas, life is going at a constant speed and now there are things that I really need to share.
This will be duplicate information for many of my readers. For documentation sake, I'm putting it all here again so I can look back on it and see where I was at the time.
*deep cleansing breath*
Most of you know that I was born with a rare congenital heart defect called Ebstein’s Anomaly. In a nutshell, my tricuspid valve did not form normally and is displaced causing my right ventricle to be smaller than average. The tricuspid valve does not properly function and regurgitates blood back into the right atrium (rather than the pulmonary artery). This past fall my retiring cardiologist referred my care to a new cardiac team at Mayo clinic. After undergoing days of test and consults, the diagnosis revealed severe blood re-gurge into my right atrium and moderate-to-severe enlargement of the right side of my heart. I feel fine, I’m not in any pain and I’m showing no major outward symptoms of heart failure. I could continue at this stage as I have for the past few years, however based on the fact that I’m not currently in heart failure, I’m still young and healthy and that we may try to expand our family, they recommended that my tricuspid valve be repaired via open-heart surgery sooner rather than later. Why, you may ask, was this not ‘caught’ by my previous cardiologist? It was. My condition hasn’t changed much over the past few years. He kept a close eye on me and warned me that when he retired and transferred my care to Mayo that their treatment plan would likely involve surgery.
When I was born there were no medical interventions for patients with EA. I’ve been lucky to lead a normal, surgery free and fairly active life. They have been developing this procedure for close to 40 years so I’m grateful that there is an option for me now and am equally grateful that a top-of-the-line medical facility is located so close to home. Mayo is amazing. My new cardiologist, Dr. Sabrina Phillips, is world-renowned for treating women with congenital heart defects and the thoracic surgeon, Dr. Joseph Dearani, is quite possibly one of the top surgeons for repairing EA. They were both confident in the success of this treatment plan and their bedside manner put me at ease.
After much contemplation and soul-searching, I decided to proceed with having the surgery in 2012. Every day I thank my lucky stars to have been given this choice, and while ultimately the surgery was inevitable, I’m grateful that I’ve been granted time to process the news and prepare for the surgery.
As you can imagine, I am feeling every possible emotion and this has not been easy to digest. I trust that I’m in great hands at Mayo. I’m trying to soak up the days that I feel well now because I know some rough days are ahead. I have heard that we should learn to ask for help when we need it. I know people will offer to help and I’m not sure I’ll know what to say when the time comes so for now I ask that you keep me, Christos, and CT in your thoughts and prayers. The pre-op anxiety has already started so I ask that you send me strength and patience during the wait. It wouldn’t hurt to start hoping for a smooth surgery with an outcome that we are planning on. (i.e. a repaired valve vs. a replacement, no infections or complications, smooth recovery). And
whatever else you think could use some prayer and thought at this point.
Surgery is scheduled for Friday, February 24th at St. Mary’s hospital in Rochester. I’ve been told I will be in the hospital for 5 days with a 6-8 week recovery at home.
If you’re interested, you can read more about EA here or watch a video of my surgeon talking about it here. I’m happy to oblige any questions regarding my condition or the surgery.
Stick around. I'm sure there will be plenty more to share.
