Summer's Guestbook

Not sure if you still look at this, and I know I'm way late to the party having just listened to your episode of the Nerdist podcast, but something you said there caught my attention. You were looking for people your age that had gone through the same thing, and I want to recommend you connect with some Marfans groups. I know the root cause of their issues are different, but heart valve replacement is a big thing for them because of valve dilation. My wife, for example, is 28 and had open heart surgery to have her aortic valve replaced at the age of 22. I just thought I'd put that out there as something to consider.

Hey Summer, My name is Bryan Malinski. I am 28 years old and on august 15th, 2016, i had the exact same open heart surgery procedure done. I had an aneurysm in my aortic valve, because of the two flap opening in my heart. So they treated the aneurysm and inserted a mechanical valve. I am currently listening to your interview on the Nerdist podcast. And heard that you would like to get in touch with people that are around you age. Very funny coincidence and great to listen to your perspective on your procedure and your recovery. so thank you!

Hi, Loved the podcast on Radio Lab! I had an aortic valve replaced on 8 July. I like the other respondents share similar symptoms. As you mentioned the heart is a pump however it is a semi- smart pump. The heart has conditioned itself to pump harder against resistance (aortic stenosis ) and does well but once the resistance is removed the heart has a hard time reversing the effect

Hi Summer, My wife listened to the podcast on NPR Radiolab. She found it very interesting because I had open heart surgery on May 13 2014. I had an aortic aneurysm over 5 cm, which needed to be repaired. During the surgery, they discovered that my aortic valve needed to be replaced too. So now I have a Dacron artery coming out of my heart and a bovine valve. Yes, I had pain after the surgery and it lasted for about 4 months. 3 months after my surgery, I went back to work as a school bus driver. I am 68 years old and after my surgery, my surgeon made me promise to walk every day. I did and now I'm running 3 miles a day. I live in DeKalb, Il with my wife, our yellow lab and 4 cats. I would like to compare notes with you. I'm leaving my email address ... mejda1@comcast.net. My cell phone # 815-757-4335.

I had surgery last September, Aortic root and Valve replacement. Surgery was eight hours. it was longer than expected due to an anomalous regarding separate origin of my CX Artery i believe. After nine days I was back home. I have the same sound from my heart valve, more like a thud than a click especially at night. I think the Dacron amplifies the sound to some degree. Any stress certainly makes the sound stronger.

Hi I just listened to the story about you on Radiolab. I had similar surgery in 2005. i have Marfans and they took out the aortic root as well as the valve (nothing wrong with the valve--they called it an "innocent bystander") and replaced them with dacron and carbon. I have had a very similar experience with an audible heartbeat, plus because of the valve there is a click. I think a lot depends on how I stand and breathe but in a quiet room it really is audible from some feet away. At night it's particularly loud. I guess I just assumed that this was a common consequence of the surgery, though I cannot think why this would be true just now. And most of the time it doesn't bother me now--I've gotten used to it. But sometimes, it's still disturbing. Anyway, just thought I'd let you know that you are not alone. It is indeed an odd sensation, though.

Hi Summer.. Just checking in to see how you are doing.. Hope all is well and that you are doing much better! Looking forward to hearing from you again.. :) ( I haven\'t been on here much either) Your almost twin... Connie T

Hey there my almost twin.... Just checking in to see how recovery is progressing for you.....this sure is \"tough stuff\" huh?? I find the mental...just as difficult as the physical most days. It is so hard to believe how long it takes to regain the strength! Before I had knee problems, I used to exercise every morning...speed walking at the track at our local park....then off to the local fitness club for bike, weight, and pool time! That sure seems light years away...and at this point, feels I may never again enjoy that schedule! Oh I know it will happen.....but was hoping it was BEFORE I turned 65!! hahahaha..... Take Care Summer.....Thinking of You! Connie T

Summer, I had optical migraines (painless but hallucinagenic in nature) several weeks after surgery. Opthamologist did a full blown test and there was nothing wrong. They lasted on and off for 3,4 months then dissapeared completely. Totally freaked me out at first! Weeks will turn into months and one day you will wake up and not even think about any of this. Terry radical mitral valve repair (robotic) Dec 2010