Recent content by LL_beanie

I have a complex congenital heart defect, and I had my third open-heart surgery at the Cleveland Clinic in March 2012. It saved my life, and the doctors, surgeons, staff, everyone, it was wonderful from start to finish. I will be returning there in January for a check-up. My doctors at home...

I wanted to thank everyone for all of the prayers and good thoughts for me. It's been a while since I posted, but I had my third open-heart surgery in March 2012 at the Cleveland Clinic in Ohio. I'm an adult congenital patient with Tetralogy of Fallot, and in 2009 I had my second OHS, with a...

quick update- successful surgery!!! released from hospital, appt with nurse prac tomorrow, fly home (new orleans) weekend or monday. overall doing ok as can be expected but thx for all good thoughts!

Pls keep me in your thoughts. I'm having my 3rd ohs today. Will try to update when possible.

short update- made it to cleveland here - staying at the international suites - the cc gave me the # to call - it was so easy. thanks for all the good thoughts and help. i had looked at boston and chop too - but i think it's a valve prob - not specifically related to the congenital defect. had...

I've had complications from my previous OHS - it feels like they put the wrong one in me, I have ToF & an absent pulmonary valve and it's been problem after problem. My pediatric cardiologist is amazing, but the complex defect seems to be rare, so I'm going to see a specialist. I found out...

I'm so glad someone else mentioned this too. What valve did you get where you feel the thumping? My first OHS, I got a St. Jude mechanical valve - in the pulmonic position. I could hear it clicking and heart beating, but it didn't stand out. The docs replaced it with an Ox-X valve 2 years...

I had my 2nd OHS two years ago to replace my first mechanical valve (lasted 20 yrs, born with congenital heart defect). My first valve was great, I could hear the ticking but it feel much smoother. This new one has felt weird since I got it. It feels like it kicks and thumps hard in my chest...

I'm glad you posted this because I think I might share some of the same ptsd problems too. I had my 2nd OHS in Aug. 2009, and it's been nothing but complications following it. But when I woke up after the surgery, I was in major pain. Since I had already been through one surgery before (20...

Not great, but I seem to the have similar issues that you mentioned & others have discussed. I had my 2nd OHS in Aug. 2009, and it's been frustrating that - like you - my short term memory took a hit. (I was born with a congenital heart defect, had a mech valve implanted when I was 14, and...

Strangely (and luckily), for the 23 years I've been on Coumadin, I never thought about this...does anyone have experiences or have been told what to do if you are in a car accident? Last week, I was driving my mom's van on the freeway, and the rear tire blew out. The state trooper who came...

Having been through two OHS, I agree it's emotional. I can't put it into words, but Robin Williams response always made me laugh. http://youtu.be/VdKl_SmYUyg This is more introspective...it helped me lot following the complications of my second OHS...

Glad that your surgery went well! I was really tired too after 3 wks out from my 2nd OHS last year. Two quick tips that helped me a whole lot: 1.) Listen to your body - if you feel tired, rest. There's no single timetable for anyone (like others have mentioned) 2.) Bc it's been such a radical...

Hi ottawagal - I was referred to a pediatric cardiologist and I'm going get a cath tomorrow. Hopefully this will help the docs figure out what is going on. Thx!

I haven't posted lately bc I've been sick. I am now seeing a pediatric cardiologist who works with adults (I was born with Tet. of Fallot and an absent pulmonary valve). I'm going in tomorrow for a right heart/ left heart cath. I had one done in the summer 2009 and they gave me the "twilight"...