Sunday, February 5, 2012

Tick Tock

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.


  1. Will be thinking and praying for you! Please keep us posted on how you are doing. I also think you are in very good hands at Mayo. Do you live close or will it be a drive for you?

  2. I'm so glad you updated this blog and let us know when the surgery was happening! Will definitely be praying. I know it's always so hard to go in for an elective procedure. My dad had quadruple bypass a year and a half ago. Instead of being on vacation, he ended up in a hospital for 10+ days and then at our house for 3 weeks of recovery. In October, he ended up back for an elective stent following shortness of breath. I think he was almost more nervous the 2nd time round because he had more time to think and prepare.

    Given the amazing non-surgical life you've been able to have, I'm sure you've thought a lot about it. Mayo is an awesome hospital and it sounds like your doctor is excellent too, so I'm sure you're in great hands. But still praying for you just the same.


  3. I work in a heart hospital but the majority of patients we see are patients required bypass rather than patients with congenital heart defects. Even though it was what I did for a living, when my Mom had heart surgery, it was the scariest day of my life. Everything went fine, but it was shocking to see the whole process from the patient/family side.

    The doctors at Mayo are the experts in their respective fields and they are the ones who set the bar for standards of care across the nation. I pray for you to have strength and peace going into surgery as well as going into the recovery phase and I know you will have nothing but excellent outcomes. Much love to you, friend.

  4. Thinking of you and your family during this difficult time. It's reassuring to hear that you were able to make this decision with some time to process/prepare for it's impacts.

    Stay strong, Amanda. Many hugs!

  5. Thinking of you every day dear! I know you are in the best hands at the Mayo. We will be here for you if you need anything. Looking forward to our GNO next week before your surgery! Love ya :)

  6. Amanda--
    Just catching up on know I go in steaks! I"m so glad I found this now, as you know this tugs at MY heart strings since it's so fresh in my life right now. Granted it's slightly different then my Mom but yet similar.

    Thank GOD you have been able to live a normal, healthy life w/o surgery yet--that is a blessing. And it is a good idea to go for this elective surgery to ensure your life stays like this :)

    I'll be keeping you in my prayers and thoughts daily. But you are a strong, young woman and will ease right through this. You are in good hands at Mayo--those surgeons do this many times a week.

    Keep us posted,
    Love and prayers
    <3 Shirls