Jessica 's Journal

Mike Tirrell  Hi Jessica, welcome, I think you will find this site to ease the anxiety you feel around your situation. I know it has helped me. Regarding your question regarding replacing valves in the moderate stages. The way it was explained to me, there is no perfect valve replacement and any time a valve is replaced, you are essentially starting the counter of time before the replacement valve degenerates or the potential risks associated with certain types of replacements (like anticoagulation for example) can start to be realized. For that reason, doctors will want you to maintain your own valve as long as possible, especially in younger patients. As long as it is functional, it is the best possible valve for you. Regarding anxiety, I know exactly what you mean. I have felt many waves of anxiety and it can be difficult to know if the symptoms are valve related. I would suggest keeping track of any symptoms you have and discuss them with your cardiologist. Don't be afraid to ask a stupid question or take too much time, this is your life after all. Hope that helps...good luck

Joey Hardee  Hey Jessica. Mike's advice is very good and spot on. I would add the blessing in your situation is that you have time to research and make the best decision possible for your procedure, surgeon and hospital. With aortic valves, there are several options for replacement procedures and I would tell you to research them all. Ross Procedure, Ozaki procedure, replacement with Bio-prosthetic, mechanical, TAVR. So many options and you have time to get second, third and 4th opinions from different surgeons. There is a wealth of information here and my advice would be to watch all of the videos regarding aortic valve surgeries. I was told my aortic valve AND aorta would have to be replaced "at some point in the next few years" in 2016. That gave me some time to prepare and research. I believe I made the best choice for me and I am 20 months in with my new bio-prosthetic valve. I feel very good and I am back to running and playing golf and tennis. I am working on getting my 5K time down to under 35 minutes. :-) There is a wonderful life on the other side of whatever procedure you eventually have. Will be praying for your journey. I am happy to answer questions.

Lisa Coombe  My valve is severe and I’ve been waiting 5 months with possibly another 2 months to go, this site has been great with all the support that has been given

Charles P  Hello Jessica. Very sorry to hear. It also depends upon how bad are your symptoms? If it is "moderate" how was the issue discovered? Since "moderate" can be a wide range, it would be helpful if you provided some of the data points from your latest echo. Like the peak velocity and AVA. Do you also have a bicuspid valve? What about ascending aorta enlargement? They may recommend waiting until a safe time when all can be resolved in one procedure. What was the final recommendation from your cardiologist? Hang in there!

Page Barnes  Hi Jessica. I just had my aortic valve replaced two weeks ago. I also had symptoms come and go and wondered if it was anxiety as well but realized either way, I needed to have the surgery done at some point as they told me I had mild stenosis but moderate/severe regurgitation. I am two weeks out from my surgery. My recommendation would be to get as many surgeon opinions as you can. I met with 4 surgeons and the first three pretty much offered me a tissue replacement or mechanical replacement as the best options which I didn’t like. It wasn’t until my fourth opinion that he offered an aortic root replacement with a freestyle valve. Still a tissue valve but he expects 15-20 year lifespan out of it which definitely sounded like the best opinion since I didn’t want a mechanical at such a young age.

Jessica Johnson   Hi Charles, thank you for the advice. I’ll have to write out some of the latest echo findings when I have a moment. Still working hard during the day lol

Jeff V.  Hi JJ. You appear to be in the watchful waiting mode. Try to be patient and follow your docs lead as they hopefully will have you dialed in for surgery. It can be terribly unnerving at times, especially when it comes time for a check-up. There is no need to rush the surgery unless you are in an emergency situation, as the deterioration of your aortic valve is typically a slow progression. Keep the faith and be glad that you are under a docs watch (and found this site) and will be prepared to go when it's your time!

rich monoson  Hi Jessica, it's an amazing surgery and I love the attitude you have to get it done. It is such a highly successful surgery and it's attitude that makes the difference. I had my aortic valve replaced April 2019. It's been incredible. I often forget I'm a cardiac patient. I was doing well but very heavy lifting caused an extreme shortness of breath and palpitations (which elevated the anxiety). The doctor told me I had to get the surgery done within 4 weeks. That was shocking to hear although intuitively I knew that it was time. The surgery went great and I jumped right into doing my own rehab. Getting mentally prepared is key. I think you'll be surprised how little pain and discomfort there is following the surgery. I was one of the minority who had post op AFib for a few weeks. 6 days following surgery I was on the elliptical machine and today it feels like I never had a valve problem. I elected to get the mechanical valve and I'm still in amazement and gratitude how well this surgery works. It has raised the quality of life and reduced the stress of knowing that a surgery hung over my head. Your doctor probably is not going to rush you in to get it done unless it is medically necessary and that's such an awesome attitude to knock it out as soon as the doctor gives you the green light. My apology for being so wordy but I love this stuff. It was an unexpected positive experience with the outcome, the hospital and people who made it possible. Feel free if you have any specific questions I can offer my two cents on.

Adam Pick  Whatever you need... Whenever you need it... Please let me know Jessica. As you can see above, our community is here to help and support you along your journey to a healthy heart. Keep on tickin! Adam

Ed Miskovic  Hi Jessica, For anxiety during the month before my aortic valve replacement, I listened to a guided meditation CD for heart surgery patients. This was five years ago, so I don't know if it's available or in what format it's in now. I have lent it to a neighbor who found it helpful. This audio came from Chicago's Northwestern Hospital department of health psychology. I also use Transcendental Meditation (TM) regularly as a means of deflecting anxious thoughts which I still get about my replaced valve. The best to you. Keep on asking questions and sharing.

William Trankle  My cardiologist watched my heart with an annual echo--it was seven years of monitoring before the trend in the thickening of my heart walls became noticeable and concerning. I went in for surgery at that point. If you're feeling skipped beats, that can be more alarming that harmful (depending on frequency and cause), but if you're hearing crackling when you breathe or other more "real" symptoms, get cut quick!

Elyse Sherman  Hi, JESSICA! I was diagnosed with moderate aortic valve stenosis at 28 years old. I was told that the valve would be monitored twice per year with echos and that, at the rate my valve was declining, I’d probably need valve replacement at 50. At age 66, I just had my aortic valve replaced at the Cleveland Clinic with the Ozaki procedure. Do you have symptoms, such as fatigue and breathlessness? Generally, if one doesn’t have symptoms, protocol has been to monitor twice per year with echos and wait so that you could buy yourself time with your own valve until it has to be replaced so that you do not need multiple valve replacements in the future, especially if you are young. Also, when in doubt, get a second opinion.