Douglas's Journal

Robert Miller  I think it's still not possible to send personal messages through this forum, which is annoying. In any case, even with severe MR there is a chance a repair is possible. They can't make a final decision until during surgery. They probably will try a repair, test the valve and then if it works end it there. If there is still a leakage, they will put in a new valve. Make sure they understand the size of your heart, where it could be after surgery, and if the cords they put in will still work afterwards. Also, I see you are doing this with Dr. Woo. Have you also talked to Dr. Castro. For my second surgery, I talked to both and my decision was very clear. For minimal invasive surgery, you might consider Dr. Gillinov. He is on the other coast but very experienced in this. 

Richard Munson  Well, so far i am a living breathing success story of what you are about to undertake. Plus i had the maze.  Its been 3 years. That in no way is any guarantee the same outcome for you but as time goes by the success % gets better.like everything in life, there are risks. Those readings we all talk about such as chamber size have all returned to pre prolapse size per my echo. 

Michele Renee  I am so beyond happy with my mitral valve repair that  I had  January 9th of this year. The recovery was a bit longer than I expected and I hit a few snags after surgery, but overall I feel a million times better than I did before surgery. I did not even realize how tired and out of breath I was until after making a full recovery. I feel like my old self again. I had an enlarged aorta with severe regurgitation. My last echo showed that my heart is now back to normal size, the aorta is only slightly dilated (not severe) and no more leakage, only trace, which I guess is pretty common. I did deal with affib after surgery, but it was temporary. I have no problems and am so beyond thankful I had the surgery.

Good Luck!



 

Suzette Schear  I had severe mitral valve regurgitation.  Heart doctor said it was the worst one he has seen and didn’t know how I was functioning. My surgeon was hoping to do a valve repair but wasn’t sure if I would need  a replacement.  He asked me if I wanted natural or mechanical.  I asked for natural so I wouldn’t be on blood thinners.  The only thing with natural is they might have to go in another time in the groin.  With mechanical it’s lifetime but blood thinners which can do damage to organs.  My heart doctor told me it’s bad he is not going to be able to repair it, but surprisingly my surgeon is the one who makes the decision , in my case he went in and was able to do the repair it took six hours.  I just take aspirin.  I had set backs but they all have been addressed and everyone’s journey is different.  Wishing you the best.

Douglas Merten  Thank you for the responses I am encouraged to hear about your great outcomes. it’s really tough, convincing myself that going into a major surgery when I’m feeling fine is a good thing. I do understand that waiting will only lead to bad things and not good things. I’m actually looking forward to the recovery work and getting myself back in shape. Still pretty terrified of the immediate time right after surgery. I’m pretty claustrophobic and the thought of waking up with a breathing tube makes me want to not show up for the surgery. But I’m getting my head straight and the success stories shared really help.

Doug Fults  You can add me to the list of happy mitral valve repair patients - they'd "watched" it for years (decades actually), the latest in May came back showing a dramatically enlarged left atrium, with a TEE confirming  severe MR, warranting surgery.  I'm three months out from a robotically assisted repair now, and feeling great.  Follow-up echocardiogram confirmed everything is at it should be - even the enlarged left atrium has returned to normal size.  P.S. I was asymptomatic as well, but was aware I was slower than most on the climbs.  I found the wakeup in ICU pretty easy, still feeling the general and with a temporary nerve block as well - "pleasantly numb".  Breathing tube removad a bit odd but welcome.

Diana Chamblin-Bevirt  I had mitral valve prolapse for years and they watched my regurgitation for decades as well. It went from moderate to severe fairly quickly, found this out in February 2024z. I had MV repair with Maze on 6/28/24. It was rough but glad I had it done. I had a couple of setbacks due to pericarditis, an inflammation of the sac around the heart, but now I’m almost 5”6 months post op and getting my energy back and my motivation to do things. My regurgitation went from Severe prior to surgery to “trace/mild” now.

Kimberly Eisenhut  Welcome Douglas! I was shocked in 2016 when I was told about my condition also, so you are not alone. I do not have mitral valve disease, but Tricuspid is my main problem along with an aortic anuerysm. I have been watched and had echos every 6 months for years now. I am still in wait and watch mode, so cannot comment on surgery yet, but many here can. I am sure there will be many others here happy to connect and answer any questions you may have. I would also suggest getting Adam Picks book, which has a lot of great information and explains so much about heart valve disease and surgery. There is so much information here on this website that will give you direction and educate you on everything you need to know moving forward. We look forward to hearing more from you and please do not hesitate to reach out whenever you need to with any questions/concerns.

Susan Lynn  Welcome! I'm a MV/Barlow's heart warrior. My surgery was 7 years ago. I'm doing just fine. Please feel free to ask any questions you have.

Kathy Ozio  Welcome! I understand the shock. I knew about my MVP for years, but suddenly went severe. I am almost at my two year anniversary.  You found the best site here for information and the best people. Ask anything!

Robert Miller  The learning center is a good place to start. https://www.heart-valve-surgery.com/learning-center.php

Douglas Merten  Grateful to receive the welcome and information. I have spent a lot of time in the learning center reading and watching videos.  Also starting to learn my way around and read others experiences. I and soon joining the MV/Barlow’s with surgery coming on January 7th. Doing preop testing and a preparation meeting next week. Family anxiety is high as we are trying to decide handling the holidays with everyone afraid of getting me sick. I I would love to hear any advice on handling the last weeks going into surgery.  I haven’t got to the totally confident all decisions are great full steam ahead yet, but I want to be.

Robert Miller  They will get your temperature and possibly do a covid check. They might also ask you if you have been around people that are sick. If I were in your shoes, I would get a covid booster and flue shot. I would not avoid family gatherings for Christmas and I wouldn't wear a mask because your surgery isn't until January 7th. Now if you plan to do some Silvester party, I might possibly wear a mask. But that's just me. If you have open heart surgery, coughing and sneezing is your enemy. That's why you try not to get sick and you want to wear that heart hugger all the time. 

Douglas Merten  Thanks, Robert I think we’re thinking alike. I likely will mask up around folks I don’t know or if a family member is sick.  Not sure what a heart hugger is.?

Robert Miller  It doesn't look the same as what I had but this is a heart hugger. https://www.hearthugger.com/ Basically, it has two handles in front of your chest. When you sneeze or cough, you use your hand to pull the two handles together. This will limit the amount your chest is expanding. It looks funky but I found it rather helpful. I got them for "free" from the hospital. And you get recognized as a heart worrier right away. Though I tried to hide it below my jacket, our neighbor across the street immediately recognized it.