Hi Amy my name is Jennifer. I'm not sure how many values you can have but I do know a little about repeat surgery. I first had surgery at 3mths. Coraction of the aorta with PDA and ASD. Dec 22,12 my mitrial value was replaced. Talk about scared. I was told it would be complex due to what happened when I was a baby and after literally three weeks in three different hospitals and omg the tests ans being sent to three cardiologists they all agreeded it was Mayo or Mt Sani in Miami. I chose Miami because if I was going to die I was going to see the ocean and be warm. Obviously I lived. My mitral valve stenosis had destroyed 98% of my valve and I had only one partially working leaflet. I am 45 with four children. My freind Cynthia who is now 63 and looks like she's mid 40S had mitralve replacement when she was 30. It didn't work. 11 months later they did the second surgery to put in a new valve. She is my mentor. You would be never know by looking at her that she went through that nightmare twice in eleven months over thirty years ago! I am hoping that sharing this with you will give you more inspiration in the knowledge that you aren't alone and others of us are here to help support each you.
Hi Amy, better healing is always a good thing! I know it means more waiting, but yay for being able to be fixed instead of a transplant. However, just so you know, I had a friend that had a heart transplant 12 years ago. He had absolutely no problems with it whatsoever, no rejection ever, great heart. He passed away a year ago, but not from heart problems, he developed dementia, probably alzheimer's. Anyway, in God's time everything will work out, our timing isn't always the best, lol. Maybe His plan is for you to "hang around the journal" and encourage those whose time has come. Your sweet spirit is just that...sweet! Hang in there, stay strong!
Linda THE Tiger, AVR 3/13/12
Amy, you have had a rough couple of year, praying that your heart will grow strong and be ready for the replacement coming up. There are so many ways you can encourage others through this! Hang in there, I will be following your journal and keeping you in my prayers.
Hi Amy That is good news. I was worrying about you, but thats me lol. Try not to stress out about anything and you will do fine. Hopfully the time will fly for you, then you can start a new again and have lots of summers to enjoy. Hang in there and prayers will continue for you and your family.
For the long haul
Hi Amy, You are going to be fine. Unfortunetely I dont think your third thought will be the one sorry. I know how you feel with all the thoughts and it can drive you crazy. When that happens to me I just say a prayer and let it be in his hands. God will take care of you. You are young and that is on your side, but this stuff will be a piece of cake. You and I will be finding that out in time. You might beat me so you will have to let me know. Juest keep hanging in there and you will do great. I will keep watching you.
For the long haul
Wow....you have been through a lot! I can't even imagine what you must be feeling, but you seem to be very upbeat and that's great!
I was diagnosed with three leaky heart valves about 18 months ago. I had no idea there was anything wrong with my heart, but the first words out of the cardiologists mouth were, " You have three leaky heart valves and they all need to be repaired or replaced." I went to Cleveland and had two of the three repaired....the other one wasn't bad enough to do anything with ( or at least that's what they told me!) I had Dr. Gillinov for a surgeon and it went fine. I will be interested to see which surgeon they refer you to.
You will be in my thoughts and prayers.....Godspeed and good luck!
Hi Amy, my father had three valves replaced about 40 years ago, then again about ten years later. The valves served him well for 30 years and he really did not look after himself – I am not a Dr but have witnessed at least 3 valves and then replaced twice – does that make six :-) Surgery has made tremendous strides since then so things are only looking better.
Good luck with the next steps, I'm sure the outcome will be successful, stay positive
Amy, I am not as symptonmatic as you. My shortness of breath comes and goes. However, lately I wake witha pounding in my left ear that goes away once I am up. I have no edema. Also this would be my first surgery. Occasionally I am light headed and feel like I need to sit or hold on to something. It passes quickly. I don't know my pressures but that my heart is in good shape. I'll retread my echo and check that. No I would not plan on going to CC. I can't even begin to consider any surgery. Will stay in touch. Thank you for your interest and concern. I am going to follow your progress
Hi Amy. Here are my thoughts. I'm not a medical doctor (MV repaired 4/26/11) but poked around in the online journals a little bit about triple valve surgery.
1. It is done, but it is not common. That means there is less experience, and the techniques are somewhat less advanced. That said, triple valve surgery has been performed for over 40 years with good, and improving, results.
2. It is significantly more risky than single valve surgery. For this reason you are smart to be going to CC (or another center of excellence with significant experience).
3. Heart health going in to triple valve surgery is a significant predictor of outcomes, so if there are any medical therapies that can delay progression prior to surgery it may make sense to take advantage of them.
From your 'My Story' I take it you are a real fighter. Keep the attitude -- DVB
Amy, do you know what grading was associated with your leakage via echocardiogram? I have tricuspid and aortic regurgitation at 2+ and my mitral is 3+. I am hoping to stay steady and not undergo surgery. Will be repeating echo in Aug.
Thanks for sharing your story. I'm 43 years old, married (she's a cardiac RN) and have two young boys (8 and 5 this summer). If interested, you can find my story by searching my name on this site.
Sorry to hear of your issues, but hopefully Cleveland can get it worked out for you. Personally, I was hoping to never have to see Cleveland Clinic again, but these things happen I guess. Dr. Gillinov and his staff were excellent. I couldn't believe how smoothly and efficiently the place ran, especially during the pre-op testing day. I just never imagined I would be returning so quickly for a second operation.
Best of luck to you and we'll be following your story.
I had my mitral valve repaired robotically at Cleveland by Dr. Gillinov last September and unfortunately am heading back there for another surgery in about 10 days. My repair failed for some reason and now my valve needs to be re-repaired or replaced. If you don't mind my asking, what type of procedure did you have with your mitral repair in 2010? Robotic, mini, sternotomy??? Also, what was the cause of the failed repair.
Hi Amy, welcome to HVJ! Wow, you've been through a lot! Are you going to Cleveland Clinic? Dr. Gillinov replaced my aortic valve in March. You said you were going "back to Cleveland", so I assume you are going to CCF. Yes, this is a great forum, one word of caution: It can be quite addictive! The thing is...friends and family understand...but....they don't REALLY understand. HVJ family REALLY understands! Welcome to the family!
Linda Dixon, AVR 3/13/12
Hi Amy and welcome to HJV!
Wow a repair and then a replace and now more...
I just had my mitral valve repaired on 5/25 and really haven't thought of it not working, good question for my follow-up visit on the 18th. Take care of yourself. I will be 46 this year as well. Karen