Gina's Guestbook

I read your story. I am scheduled to have surgery in 7 days, the anxiety is awful.  I have a question on the dizziness.  Did it ever go away.  I have had episodes of intense dizziness and was hoping this surgery will resolve that issue.  

Greetings Gina Came across your posts today and realized that I had mitral valve repair at about the same time as your own with Dr Castro and team at Sequoia (mine April 11, 2018) and that I also was misinformed by another cardiologist. I want you and others to know that I have zero chest problems and the scar is not at all noticeable and the repaired valve is functioning well. So thankful for Adam Pick's web site leading me to a great hospital and doctor team. You look so young. I will be 80 next month. Guess there is a wide range of those who can take advantage of MVR.

Hi Gina, I don’t know if you have seen that a new community member was looking to connect with you on the recommendation of Dr. Castro. It seems to be because she is looking to navigate (if not too late, the possibility of changing from Kaiser to a Covered California plan). She also has mitral valve issues. It stood out to me because Dr. Castro was my surgeon in August for AVR! https://www.heart-valve-surgery.com/journals/user/lindayoung

Hi Gina, Catching up on the website and saw your post. Thank you very much for the well wishes. I hope you are doing well too. Nice to know others had the "Kaiser experience".

Hi Gina. Hope you are doing well. I just read your comments to Kirk about the metoprolol causing restless legs for you and I noticed I have the same thing at night, but I didn't make the connection. In the past, my doctor told me to drink more water. So I have been, which means, of course, I have to get up more at night. Hopefully now that they are starting to reduce the dosage it will start to lessen the effects. Funny how things like this effect you.

Hi Gina, my husband and I are following your story. He needs to have mitral valve surgery on the anterior leaflet. We live in San Francisco and are going to be consulting with your surgeon about this, it sounds like you are doing well.

Oops, Gina . . . after I sent my last msg. to you, I read your story--which I SHOULD have done beforehand. Anyway, it's clear you don't need any pep talks on the importance of research. In fact, I consider you the Role Model for Research. Congratulations! You claimed your own power, and it paid off. I'm confident it will continue paying off as you recover and help others with their heart issues. Best, Artie

Hi Gina, Glad to hear you're coming along fine. As for your experience with your initial cardiologist--everyone, listen up! Medical providers are NOT God. They don't always know what's best for you, so it's up to YOU to research everything. Remember, no matter how vulnerable you're feeling, you're hiring THEM. You set the rules, within the parameters of your condition. That means, research, research, research. (As always, many thanks to Adam for making it so much easier.) I love research, but for those of you who don't, find someone you trust who does love it and let them do it for you. Pay them if necessary. BTW, Gina, your not remembering much about your operation is very common. You might enjoy going on youtube and finding the "Barbara Walters heart surgery" clip. All my best to you, Artie

Hi Gina, Congratulations on your successful surgery! I also live in the Bay Area. I have been in a difficult situation for a year due to differing opinions about surgery. I have a moderately dilated left atrium but left ventricle and EF is ok. I suffer from palpitations and take beta blockers. Anyway, I pushed for surgery and was scheduled to have surgery at Stanford in April but I have postponed because of extreme anxiety. Now that I am facing the surgery, I feel that I can't go through with it. So brave of you to do this despite your cardiologist's opinion. Glad Dr Castro and Sequoia was a great experience for you. I am quite at peace with my choice of Stanford and Dr Woo. Now if I could get over my fear and pick a date, instead of freaking out so much. I am absolutely terrified. Best wishes to you for recovery! Nupur

Hi Gina. I too have Kaiser insurance and use the San Francisco hospital. I don’t want to have my surgery there. How did you get doctor Castro to do your surgery?

Hello Gina, So glad you found Dr. Castro. You are definitely in good hands. This coming Wednesday will mark my one month anniversary for mitral valve replacement by Dr. Castro, and I am feeling great. The nurses in ICU (where you’ll be taken to recover after surgery) at Sequoia Dignity Health Hospial were a God send. Their patience and expertise helped me to recover quickly. You’ve chosen a great facility & surgeon. Best Wishes, Melissa

Gina - Glad to see your post that surgery is behind you. Every day is one step closer to feeling great! Hope your hospital stay is going well. Best of luck for a speedy recovery!

Gina, I know your surgery is scheduled soon. I just read your whole story and wanted to give you a few tidbits I've learned. Mini-St: When I asked my surgeon about this he said it "may" be more painful than the full-St. because they have to cut muscle rather than just bone. Also they do not have as much room to operate, which can restrict what they are able to do. Repair or replace: In my case, my surgeon believes the valve tissue is diseased which is why it has become progressively worse. But he strongly believes in repair over replacement, and if possible will repair if after seeing it during surgery he believes it can be repaired. It is important though that you understand which leaflet is the problem the posterior or anterior. From what I've read, the posterior is much easier to repair than the anterior. The majority of MV specialists can and do repair posterior leaflets, but the anterior repair is only done well be a very few. In the words of my surgeon, "I'll repair it if I can, but be prepared that it could also be replaced... and tell me what you'd want me to replace it with (artificial or mechanical)" I hope your surgery goes well and am very glad for you that you've found a surgeon that is more knowledgeable. Jim

Hey Gina, hope things are going well for you. I've noticed as my surgery draws nearer I've been more moody. It seems like the closer that surgery gets the more real it gets. I'm praying for you that all goes well with your surgery and for a speedy recovery as well.

Thank you, Gina. This site is so wonderful that I have been able to speak with 4 of Dr. Accola's former patients. Everyone has spoken very highly of him and that is the reason I fought so hard to be able to see him. Best wishes on your surgery and thank you for finding that for me.

Hi Gina! I saw your comment on Don's page. I'm glad you persevered and found your way to an excellent surgeon. I'm sorry you had to have the added anxiety of having a less than caring cardiologist and others that didn't seem to understand your desire for repair rather than replacement, especially since you are young and healthy. I had my mitral valve repaired at Cleveland Clinic at 62 (10/13/16). I was considered young for heart surgery and you're even younger, so with the right care, you should do well. Unfortunately, there are no guarantees, as I'm sure Dr. Castro will tell you. There's a lot of support as well as tons of information on this site. I found answers to questions I didn't know I needed to ask among the experiences of others here. Please feel free to ask away on here, or if you'd like, you can email me at fabphyllis@gmail.com. BTW, I'm doing very well. I'm having a little issue with getting my weight back down, but I'm sure that'll happen in the near future.

To read anyones' particular story, just click on their name at any of their posts. It should take you to their own page and you can read their story or journal. Good luck!

Gina - I had mitral valve repair two months ago. Unlike many of the folks I see on the site, I had a mini-thoracotomy, rather than a mini-sternotomy. I had very little pain, minimal scaring, and a quick recovery. Surgery was on Friday and I was released from the hospital on Monday afternoon. The most important thing is to find a surgeon who does a lot of repairs -- mine does upwards of 75/year. Waiting for the day of your surgery to arrive is the worst part!

Hi Gina, I too was born with a mitral valve problem and heart murmur. I learned about it when I was 10 years old. When I was a teenager I took Inderal to keep my heart beat regular. I stopped about 5 years later. I didn't really have many problems for a long while then in 2015 my doctor wanted me to go back to a cardiologist for an Echo. The results were moderate regurgitation but I was not having many symptoms, so I went back 2 years later for another Echo, but this time my valve was leaking and it was severe. I pretty much knew beacause I was getting winded very easy by just going up a flight of stairs. My cardiologist recommended open heart surgery. I asked for a second opinion and was referred to Cleveland Clinic in Ohio. They have been #1 heart hospital for 23 years. After about 6 months of appointments and tests I was recommended for mitral valve surgery. The cardiologist were very secure with doing a mitral valve repair and said that it is always better to get a repair if possible. I was able to have the robotic surgery to fix the valve, which is less invasive but still was very painful. I had my surgery done exactly 2 months age today. My surgeon was Dr. Gillinov and he is credited with doing the most mitral valve operations than any other heart surgeon. I'm just having a few problems with low blood pressure and a higher resting heart beat. I went back on Jan 26 th for my follow up, my Dr. Said to continue my cardiac rehab since my heart muscle was still stunned from the surgery and has to get use to pushing out more blood. I go back in 6 months for another Echo and hope my ejection fraction is back to normal it was between 50-60 before surgery and now is 35. Cleveland Clinic is a great hospital.

Hi Gina, I read your story. Our stories are similar. I am in TX. I have a mitral valve prolapse with severe regurgitation. This past week I had a heart catherization which showed the regurgitation was severe. My cardiologist is also suggesting that I wait, even though I have a number of symptoms. I've chosen to send the results of my heart cath to 3 surgeons for review despite the opinion of my cardiologist. Sending best wishes. I will be following your journal.