Heart Surgery

I set this blog up last fall, as you can see, in order to share the more joyous family times with friends and family. Unfortunately our newest adventure isn't the summer vacation we would have chosen but here we go anyway.


A little background for anyone wondering....When I was 11, I was diagnosed with aortic stenosis or a heart murmur as it was called back then. It was diagnosed actually on the day of my hip surgery I had as a child. I was followed closely by the top cardiologist at Rainbow until somewhere in my teens and wasn't given any precautions other than antibiotics before dental work.

Life got wonderfully busy and full with children. Fast forward to 2004 when we were blessed with our littlest guy, Michael who was born with Down Syndrome. As many kids with DS are, he was born with some pretty major heart problems. We were lucky (I mean blessed ) enought to avoid open heart surgery but did manage to spend a huge amount of time in cardiology offices. When he was almost 2, we had switched cardiologists. While this new doctor was taking down our family history he was the one who was very alarmed at the fact that I had been diagnosed with aortic stenosis and had not been seen by a doc for it in about 20 years. He urged me to follow up on it asap.

My first follow up was uneventful but a year later, the new doctor in the practice told me that with aortic stenosis I am at risk for developing aneurysms in the aorta. My other risk factor is that my dad actually died from a ruptured aortic aneurysm.

In Feb of 2008 I elected to have my hip replacement surgery. Prior to this surgery, I had to be screened by the cardiologist. At this time, it was found that I do have an aortic aneurysm which measured 4.5 cm. This size is considered stable and I was o.kd for surgery.

Follow up in April of 2009 showed that the aneurysm had grown to 5.2 cm. I was then referred to a surgeon as this is considered rapid growth and the size is considered surgical. The stenosis of the valve has also worsened. The fact is that the valve would need to be replaced within the next couple of years even if the aneurysm did not exist.

So, since May we've been surgeon shopping and just processing all of this in general. In order to be seen at the Cleveland Clinic, I had to send them all of my test films for review. I expected to get a call back from them to schedule an appointment with the surgeon I had found there. I did get that call but the appointment they offered me was pre op testing and a surgery date of July 7th.

Shocked we were but went through with the testing saying the whole time that we were at the CC really only to find out if this was truly necessary now. We were assured that if there was any doubt that it was necessary, we would be given the option to wait a while.

After 3 intense days of testing, we met with Dr. Lars Svensson, who not only told us that that it would be very unwise to wait he also told us that the aneurysm actually measures 5.7 cm. The risk is that the aorta could rupture and the survival rate from that kind of event is very low. With my stenosis creeping into the moderate range at 1.2 cm I am feeling some symptoms set in. Once symptoms set in with the stenosis, survival is limited to just a few years without valve replacement.

So, the fact is that I have 2 conditions. Aortic stenosis which causes some symptoms and requires an aortic valve replacement soon after symptoms appear. Then there is the aortic aneurysm which has no symptoms but carries with it the risk of sudden rupture. For this they will replace a portion of my aorta with a dacron tube.

I will be admitted tomorrow July 6 to the Cleveland Clinic. They like to start IV fluids the day before this surgery. Surgery is scheduled for July7th. I am expected to be in the hospital for about a week.

Gil will update this site from the hospital during surgery.

Thank you to all who have prayed for us already. I can truly feel the support of those prayers. Please pray for Gil and the children as we go through this very scary week. Anyone who knows me knows that the hardest part of this for me is being away from my family especially my little Michael. I am so blessed to have the family that I do who love and support each other, but as mom I can't help but worry about each and every one of them. Your prayer support for them during this time is very much appreciated.

The absolute highlight of my 4th of July yesterday was my time spent in front of Our Lord at the Poor Clare Chapel. I felt assured during that visit that I am in His hands and all will go well.

I promise to use some of this time to offer prayers for all of you and your intentions. Thank you all who are here for me and my family.

Barb