I am celebrating the 50th anniversary of my first open heart surgery and aortic valve repair, September 2015! I was too small for a bovine or mechanical valve, a repair was the only option. I was seven and had symptoms from my Bicuspid Aortic valve for several years, fatigue and blue lips. Today, I am 16 weeks post-op and nearly recovered from my last successful OHS in May 2015, number four at the Cleveland Clinic.
I had found the Heart-valves-surgery.com website about a year ago, but I didn’t see any information related to my new issue, ascending aortic aneurysm. I finally joined the group a few weeks ago and found a wealth of information, wonderful stories and questions that I could offer my experience and suggestions. Specifically, I found many other heart friends that were in the same or similar boat I was in, and a great interview by Adam Pick with my surgeon, Eric Roselli!
I have had an AV repair and 3 different kinds of aortic valves, porcine (lasted 12 years, but the last 3 years I was on Coumadin), St. Jude mechanical (became really bionic that time with a pacemaker due to AV block from surgery #3), and now On-X aortic valve and an Edwards Annuloplasty ring to shore up my regurgitating Tricuspid valve (and a new ascending aorta).
I found out about the aneurysm early in 2013. It was about 4.8 cm (surgery threshold was ~ 5.5 cm). I was now being followed by a very good surgeon, “not a candidate for surgery” he said, still wait and see mode. Several 6 month check ups go by, my aorta is 4.9 cm and my surgeon surprised me when he said “you should have surgery sooner than later, like in a few weeks”, but there was a nervousness in his voice. He did tell me the first time we met that the surgery was going to be difficult with the ascending aneurysm extending into the arch and it is my 4th OHS. I did not feel comfortable with the situation and neither did my husband or regular doctor. What I found out later (from my Cardiologist) was new medical studies changed the threshold from 5.5 cm to 5.0 cm or less if the candidate was small and has/had a BAV. I was now at 4.9-5.0 cm, born with a BAV and a petite person. Time to get a plan I was comfortable with!
My regular doctor said it was prudent to get a 2nd or 3rd opinion, even if it meant leaving the Los Angeles area. I interviewed a 2nd surgeon in the LA area and that was worse! He didn’t want to touch the arch and gave me even worse odds of a successful outcome. My internet search led me to the Cleveland Clinic. The CC kept coming up. On their website I found outcome reports, better than the national average, even for multiple re-operations like myself. Last fall I sent my medical records for review. The surgeon, Dr. Roselli chose my case, said "you’re not a candidate for surgery yet." I schedule a follow up with Dr. Roselli for January 2015 (So Cal girl goes to Ohio in January)! Based on new images and test data, surgery to repair the aneurysm was recommended soon, before the end of 2015. Since I was going to have surgery, he recommended a new aortic valve. My St. Jude mechanical valve was 22 years old and a little undersized. He offered a tissue valve, but if I live a good long time, I would most certainly have another OHS to replace a tissue valve. I said yes to a new mechanical valve. He preferred the On-X over a St. Jude valve due to the design opening allowing for a lower INR range and lower dose of Coumadin.
Dr. Roselli answered all of our questions and said he had an awesome team! It was nice to hear from the surgeon that a strong team, not just the surgeon, was a key to a successful outcome. I scheduled surgery for May. He said I would be his only surgery that day, it would be a long day for him, looked at my husband and said “it would be a long day for you”, and turned to me and said “you’ll be asleep”. I found the right guy, passionate about aortas, their failings and repairs, does hundreds of surgeries a year, and had a sense of humor!
My pre-admit appointments went well. The CC Cardiologist said Dr. Roselli is an excellent surgeon and he can think on his feet (see next paragraph). He also said I would not be Dr. Roselli’s toughest case, even with 3 previous OH surgeries and the ascending aorta repair.
My surgery had a few surprises, the artery tissue was more fragile than expected. There was a larger artery graph repair than expected, but he fixed everything that needed repair, aorta and carotid artery, aortic valve replaced, tricuspid repair. I spent 2.5 days in ICU. I was discharged 8 days after an 8 hour surgery. Some fluid started to build up within days and it was impacting my breathing, but I couldn’t quite tell right after discharge. I was a little soar and weak. I decided ahead of time not to rush back to California. During my first follow-up appointment 4 days later, the exam showed a pleural effusion behind my right lung. Ten days later I was back in the Cleveland Clinic for a thoracentesis to remove most of the fluid. I was hoping the diuretic medicine would expel the excess fluid, but it did not. A few days after my second discharge, I headed home. Even though there was still some fluid, it was time to leave Cleveland and finish my recovery at home. I was walking and gaining my strength, but still not breathing deeply. I ended up having one more thoracentesis in July, but since then my energy really picked up. I feel good now (although I didn’t have any symptoms prior to the surgery, just stress knowing my aorta was enlarging). I started my formal cardio rehab program 2 weeks ago. I have been walking everyday since I got out of ICU.
I’m pretty active, my bruises betray me now and then. I have the usual restrictions, I’m on Coumadin, so I eat consistently, greens and a glass of wine daily. I’ve had to give up a few wild and crazy things that I was able to do when I had the porcine valve, like fly sailplanes and teach people how to fly, but I couldn’t do those things before I had my pig valve, so I think I lucked out!
I have lived with this a long time, I know this is new diagnosis for many of you. I will do my best to offer support to my heart friends that are just finding out about their new health challenges and the complex decisions that come with those challenges.
Life is good!
More Info About Me & My Heart
More About Me
I am from:
My surgery date is:
May 20, 2015
I was diagnosed with:
Bicuspid Aortic Valve
My surgery was:
Aortic Valve Replacement
Aortic Aneurysm Replacement
Tricuspid Valve Repair