Pamela Watkins posted a note for Audrey that says:
It's been almost 2 years since you have posted anything. I would love to hear how you are doing and if you had the mitral valve repair. Thank you. I am wondering because I too have moderate mitral valve regurgitation and wonder if I should pursue a TEE since I am having symptoms of shortness of breath, fatigue and palpitations.
I have to have repair surgery and have been on the fence between robotic or minimally invasive, and I think you helped me make up my mind. I've had echos and the TEE. My regurgitation is severe, but I do not have symptoms. That makes even thinking about this difficult. Multiple opinions confirm doing the surgery before I do, as my atrium is quite stretched. I toyed with going to CC, but will most likely do it locally. The surgeon is the robotic expert the Hartford, CT area and Hartford Hospital has a very good reputation for cardiac care.
I enjoyed reading your guestbook. Stay well!
I had robotic repair done for mitral valve in Dec. Recovery is very fast and I had almost no pain after surgery. My pain was from coughing due to lung infection, not related to the surgery. I was on regular tylanol and advil since 2 day after surgery! I did take those for about 2 weeks and than the pain was gone. When I left hospital I had no restrictions, i could drive, walk, run whatever i want or could do...
The major thing is it is still open heart surgery not open chest, but heart is stopped and it needs time to heal and you do feel very very tired and no energy for sometime after surgery.
But the decision to go with robotic was good one and I am very happy with the outcome! Any more details you can read in my journal or email me, ok?
Another May MV repair case here....I'll be a little ahead of you, on the 11th. Not having robotic myself, but I'm sure you'll be hearing from lots of folks here who have gone that route. In the meantime, I'll be waiting right alongside you.
Hi Audrey. So glad that your journey is finally underway. You asked in Sep if I felt all the way back to normal. Yes and beyond. My regurge was backwashing half of my flow. Now that I have it all going in the forward direction I'm able to do what I could ever do since being a teenager. Of course it took a lot of physical work to get here, but it was a good challenge. You are going to be amazed at the difference. -- DVB
Hi Audrey, I just read your journal for the first time. I only found the site since your last post, so that explains why I haven't "met" you before now. I wish I been here when you were having so much trouble getting your TEE results to Cleveland Clinic. I would have told you to make a trip to wherever you had the test done and get it for yourself. That is what I did. I just had to sign a release form and I got the reports and the CD's in my own hands and I overnighted them to Dr. Gillinov myself. Yes...Dr. Gillinov is going to replace my aortic valve and possibly repair my dilated ascending aorta. Won't know about that for sure until I get up to Cleveland Clinic on March 9th. They will do another echo, haven't had anything done since November. It takes a while to get a "date" with Dr. Gillinov, he is so busy. But aren't we lucky?! I am "nervous" but so ready to get it over with. So, let's keep in touch, I will let you know how Dr. G does!, lol. BTW, everyone that I have come in contact with at CCF so far has been awesome! Just about all you will have to do, is show up for surgery. They have a medical concierge who will handle all my travel arrangements, flights, hotel, etc. and they even have a limousine pick me up at the airport and take me back. Free!!!
Glad to meet you!!!
I'm home from the hospital and doing great. I'll post on the blog later but I wanted to you know that the entire procedure was remarkably pain free and comfortable. And effective, I must add. If you'd like details or any other info or comments, email me directly at firstname.lastname@example.org and I will respond.
Best wishes, Al Kildow
Thanks for your notes. Three days since my surgery and I'm feeling great. Walking all over the hospital. Dr. Castro said the lack of pain is due to the fact that dhis team makes a minimal incision -- 3 inches in my case -- and doesn't spread the sternum as far as others due. Hope the results of your heart cath were as good as mine. Have you scheduled your surgery yet. Good luck and best wishes from California.
The heart cath is not a big deal --- honest – this is coming from a girl that was never in the hospital before !!! The hardest part was lying in the bed after the procedure for the 4 hours and staying somewhat still – I just kicked back and watched TV and enjoyed the down time !!!
I had my mitral valve repaired on Sept 2nd at the Cleveland Clinic and Dr. Sabik did my surgery – great guy --- everything went perfect and my valve is working great :) -- Biggest advice I can give is be sure that you have enough pain meds in the ICU when you have to get out of that bed and into the lazy boy chair --- Everyone at CCF are fantastic and you will be in great hands !!!!
If I can answer any questions drop me a line I will do my best to answer them ….
Hi again, Audrey. The heart cath is a breeze. You'll get to watch it and see all the little tentacles leading to and fro in the heart area. In my case, I also got to see all the little metal clamps left over in my tortured body from my motorcycle crash. Let us know what your docs tell you. I know you're going to be fine.
I had a single heart cath back in 2009 and a right and left heart cath last month prior to my open hear surgery on Sept 14th. Both went off without any complications. They were interesting in that I was conscious during both. Just had to lay still for about 4 hours afterwards before I could get up and move around.
Hi Audrey. I too had MV prolapse and regurgitation, last April underwent successful open heart surgery to repair my valve at UCLA. I took as my bible the American College of Cardiologists "Guidelines" available as a pdf at
I was graded as severe (grade 4), even though I had no symptoms. So the guidelines stated I should proceed to surgery at a center of excellence, which I did. I found great peace if following guidelines that had been worked out over the years by the world's best minds.
Glad you are plugging into a center of excellence where you will get the best possible care.
Audrey, Could you share why you were seeing a pulmonary doctor and she was the one to diagnosis that you needed the repair. I had mitral regurgitation like you on 7/12/11 at Cleveland Clinic. It was a complete success. Dr. Gilinov did mine - he is awesome -
I too had high pulmonary pressure but was told that it was coming from the mitral valve leakage. Back in 08 I saw my mitral valve leak getting more but the doctors told me that it did not warrent surgery yet - just like you. they started paying attention when the pulmonary pressure stated increasing.
I am in the same boat too. I have mitral valve prolapse with moderate-severe regurgitation. In the spring after my stress test, I was told to consider having surgery soon. Now I'm in a treading water waiting mode... seeing my cardiologist every 3 months. I also am into running. I know I have slowed down and have to stop and take walking breaks during my runs. Like you, I plan to eventually end up at the Cleveland Clinic. I'll be glad when this is all in our pasts. Feel free to write me at email@example.com if you ever want to talk.
We have very similar diagnosis. I'm 24 and a pretty active person. I love working but my biggest passion is school. I am currently working towards a master for special education but within these last two weeks my life has come to a surprising stop. I went in for a murmur check up my doctor had been nagging me about and was told surgery needed to be done within three months. Now after a stress test, echo, ekg, and tee test they don't know how soon to do my surgery. Problem is I am now fainting and fatigue plus my husband is getting out of the military so our "good" insurance will be ending. ( I have been told surgery will probably happen within 3 months if not sooner). Now not being in school and on disability it is hard not to feel useless. I know God has big plans for me but I understand your frustration. I will keep you in my prayers and follow your posts :)
I was not in the same book as you (my aortic valve was replaced in May 2010 several months after I had my first symptoms - by the time I had symptoms, I was pretty far gone.) As Rae said below, they are likely trying to delay surgery so that your replacement (especially if you opt for a bio-valve) will last longer.
You live very close to the best heart center in the country. If you are not being treated there, if I was in your position, I would have an evaluation there to double-check the advice you have been given. I had my surgery at the Cleveland Clinic and I trust their judgment 100 (no, 1000!) percent.
I am in the same boat. I have mitral valve prolapse at level 3.5 and also tricuspid leakage at 2.0 and aortic leakage at the mild stage. Two doctors have told me I'm "not bad enough" yet, and two have told me I should have the surgery this year. I'm having it done in Cleveland in October, because like you, I don't see the point in sitting around and waiting to get worse. I have A LOT of palpitations, but otherwise I feel pretty good most of the time. I do get tired, but not extremely. I've been dealing with this for about a year now, and the stress of worrying about it is driving me nuts! I just want to get it over with. Good luck to you.....I hope you find the answers you need.
Sorry to hear your health is not as it should be.
Sorry to ask the obvious, but have you told your doctor how bad things are for you?
They won't want to do the surgery until they feel you need it, most likey because they want the life of your replacement valve's life extended as far as possible.
I know you mentioned you couldn't do exercise the same, but please in your situation take it easy anyway. Walking is normally recommended, but please don't push yourself. (I'm not a cardiologist, or a fitness instructor, I'm just going off personal experiences and advise I received).
I had to wait a little time, they wanted to make sure they weren't doing the op too early. It's all about fine timing!
Sadly life does change when things start to go down hill with the valve, but worry not, when they think it's time and you have the a replacement (if that's what you need), your health will be better than ever!
Take it easy, keep the valve you have stress free as much as possible. No hard work outs!