Mark's Posts

You are on this website which is one of the main things that helped me! That along with reading Adam Pick's book on what to expect with heart valve surgery. It has just about everything you need to know about heart valve surgery and getting through all the stages of this process. Some people like all the information and some people don't want to know. I am one of the ones that want to know everything so I did a lot of research outside of this website as well but I found this to be the most comforting site with an abundance of people who offered advice and support and continue to! The anxiety and fear is normal and there's not one person on here that wasn't filled with both of those things going into this! Personally, I had an almost 4 month wait which just built my anxiety up through the roof. By the time my surgery date came, I just wanted to get it over with so I could get rid of all that anxiety. I think it's pretty much the same for everyone here in that regard. Use this site and hopefully it will provide you with some helpful information and peace. We are all here in this together. 💗💗💗

Very good counsel Amy. Like you I'm someone who wants more rather than less information about what to expect, risks, outcomes and most importantly my desire to get back to some semblance of normality post operation (whenever that might be). Timing of my operation is not clear. I get reassessed in January 17 - one cardiologist says he will likely refer me to a surgeon then. Another cardiologist I saw (second opinion) is of the view that it may not be as urgent and that the heart muscle itself is compensating quite well with the aortic regurgitant overload. Part of me just wants the operation out of the way so I can get on living. I am naturally a very anxious person, and I'm already on medication to keep anxiety levels in check!. Once again, thank you for advice. I take comfort in knowing there are other people out there with similar issues and always good to hear of positive outcomes. And as you say - "We're all in this together".

Hey Mark. Like you I'm 50 was born with BAV and AS. At 10yrs old had aorta repair surgery. Was told that someday may need valve. But 10 your more conserned with baseball, cars and girls are starting to be kinda cool. Lol. So jump 40 yrs and feeling great , a gym rat , playing with my hotrods and loving my family . Bam. After a tricep tear find out my valve is only letting 20-25% flow through. My heart from heavy training for 30yrs is good but way over worked. Next thing you know , knife time in less then a month. I'm the kind that figures that the docs are going to do there best and me knowing all the details really stresses me. I figure that when I work on customers engines they don't ask much and trust me. I think my dr deserves the same respect. This site I've found is incredibly informitive. Seems all that can happen someone has had it , delt with it and will advise on what worked for them. It's pretty awesome. God bless and good luck on what's next bro. Rembember all things work to impove you as a person for your benefit.

I think a lot of people's anxiety comes from a fear of mortality. I had a bit of that. I am a stats person so I researched a ton and found that the stats are in your favor for BAV replacement. It seemed that if you had a mildly competent surgeon and hospital you are looking at 3-5% death rate approximately. If you move up to a good surgeon and good hospital the rate of death was like 1-3% (local to my area). The hospital and surgeon I chose had a less then 1% incident rate. So statistically there is a very high chance your surgery will go great and there was nothing to worry about except recovering.

I did tons of research, read Adam's book, and was able to find acceptance of my condition before I even talked to a surgeon about the possibility of surgery. It was 10 weeks until I could get a consult appointment and then 6 weeks after that for surgery. The worst was waiting for the consult appointment because I had pretty much decided I wasn't listening to my cardiologist anymore and referred myself to an expert surgeon. I knew what he was going to say, and he did, that he could repair my valve and he was 100% confident (his last replacement was 2003). But knowing I was having the surgery before my heart started to compensate gave me peace of mind. I won't say I had no anxiety, but I had very little and pretty much didn't miss any sleep over it.

I was born with BAV and had an ascending aortic aneurysm and knew that some day I would need surgery. When my cardiologist said it was getting worse about two years ago, I started researching surgeons and hospitals. I found Dr. Deeb at U of M Hospital who has done about 10 thousand OHS and they have a 99 per cent success rate at U of M. I decided that this is where I want to go and its fairly close to where I live. I had the surgery June 2nd 2016 and all went well. Very little pain and 4 and half days later I was home. My advice is to research doctors and hospitals and find one you have confidence in. I felt very little anxiety and knew I was in a good place. This site helped a lot too. I'm glad I found it. Good luck!

Mark, depending on your insurance, you can make an appointment to see a heart surgeon before your cardiologist refers you. You need a PPO. I did a bunch of research (PubMed if you are willing to dig through the medical terminology) about the pros and cons of early surgery, and went to 2 surgeons for opinions. You are likely to get different opinions, but you will also likely find that some are more in line with your philosophy than others. Although my cardiologist is not a fan of me having my OHS (mitral valve repair) sooner rather than later, she respects my right to choose based on my research and understanding. I'm really happy that I pursued going to see surgeons outside of her referral. You can check out surgeons credentials on CTS.net and check out hospital valve programs in the info from USNews and World report. And yes, I am still anxious about the surgery, but that wouldn't change in 6 months or 2 years. Best, Ellen