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Aortic aneurysm with bicuspid aortic valve
Hello, I am looking for some advice. I was recently diagnosed with a thoracic aortic aneurysm and told I have a bicuspid valve. My aorta was last measuring 4.6cm and I was told at 5 cm I will require surgery on both the ascending aorta and to replace my valve. My cardiologist figured it would probably be within the next 3-5 years. Terrified doesn’t even discribe what I’m feeling. That however is a whole other can of worms.
With what little I do understand about everything,I was sure I would be getting a mechanical valve but the more I read the more unsure I am. I really don’t want to have more then one surgery however not sure if the risk of more then 1 surgery outweighs the risks of blood clots and being on blood thinners for the rest of my life. I would appreciate any opinions. Also how many sugeries can a person actually have is there a limit to how many times a valve can be replaced? Is it riskier with each surgery because I will be older? I have a ton of questions however I have been so emotional lately I feel like I’m kind of all over the place.
I do not smoke, rarely drink, am definitely not a physical as I could be, eat fairly healthy, cholesterol and blood pressure are good, low iron, I am overweight, I am a 35 year old female with Chronic headaches and back/neck pain but am otherwise in general good health. I am not sure what else is relevant.
Also I have been told a bicuspid valve is hereditary and I will be getting my 4 year old daughter tested to see if she has it as well. Does anyone know the odds of me passing this on to her or what Kind of complications i could have caused for her. She is terrified of the doctors since I had been admitted to the hospital earlier this year with myocarditis ( which is how I found all of this out) and I’m scared of anything she may have to go through. Unfortunately we live in a city that is not big enough to have cardiologists or any otherkind of support or information. So here I am. I have an appointment with our family doctor but it is not until January and i think I may be making myself crazy with everything. Please any advice, opinions, or information anyone can offer would be greatly appreciated!
AHAASAKatie, December 4, 2018 8:45am EST
Good morning, thank you so much for coming to us and sharing what is happening in your world. We have a wealth of information on heart valve diseases, treatments, and recovery tips. We also have a very active heart valve community and I look forward to reading the responses and survivor stories that are shared with you. Please know that you are not alone, we are with you and here to support you. Best Katie
AmbassadorDN, December 9, 2018 2:13pm EST
You've come to the right place! While my valve defect is different--I was born with a defective mitral valve--I can hope to answer some of your questions as well as share a bit of my story to hopefully give you some insight.
First, speak candidly with your cardiologist about how you're feeling. If you trust him or her, your doctor can help provide some realistic expectations and advice to help you with your fears and worries. If you can, seek out a therapist you can speak to about what you're feeling. I have spoken with my cardiologist so many times I can't even count! My valve surgery journey began almost 13 years ago, and my cardio's nurse jokes that I should have my own private room in my cardiologist's office because I've been there so much! I have learned over the years to be my own best advocate and to speak up. If I don't understand something, I talk to my cardiologist until I understand. If I don't like his decisions, I challenge him. For example, he wanted to put off referring me to surgery last year (I kind of did, too), but I knew the risks of waiting too long. After some back-and-forth, he ordered some more testing that revealed that my mitral valve was in really bad shape, and that we needed to get surgery done as soon as we could. My cardiologist and I are like brother and sister and we have a good rapport. That is really important that you are able to work well with your cardio. And about therapy: I saw a therapist (after my surgery last November) to help me deal with all the post-op depression, worries, etc. It really helped, and my therapist has had health troubles of her own which helps her understand me better. There is no shame in seeking help!
About surgery: I've had 3.5 heart surgeries. In 2006, I had a mitral valve repair, then in 2016 we had to replace my valve because the repair was no longer holding up; and in 2017 we did another valve replacement because the valve replacement from a year earlier did not work. (I had a tissue valve implanted in 2016, and now I have a mechanical valve). The. 5 was from a complication the night of my most recent valve surgery because I had a bleed that needed addressing. In reality, there really isn't any "limit" to how many valve surgeries a person can have. Some heart friends have had upwards of 6 surgeries since they were babies. Thankfully, heart surgery has become so advanced now that the risks are far eclipsed by the benefits!
About "blood thinners" or anti-coagulants (Coumadin): I've been on Coumadin for several years, first to address a heart rhythm issue (atrial fibrillation) and now because of the mechanical valve. Please ignore the myths about blood thinners. Some people believe that you can bleed out from a paper cut, no joke! But it is false. I'm a world-class klutz, and a teacher, so I'm always giving myself paper cuts as I hand out papers to my students or make copies. Another myth is that you can't eat leafy green vegetables anymore because the Vitamin K thickens your blood. You can enjoy a spinach salad or whatever, but you will need to "dose for your diet" based on how many leafy greens you consume daily. It is true that if you have a mechanical valve that you will need to be on Coumadin the rest of your life because there is a higher risk of developing a clot. Don't let that scare you! As long as you don't plan on playing contact sports, you should be fine. You can still be active and do most anything you want to do on Coumadin. Like any other medication, you will have to be aware of drug interactions, etc. However, if you plan on having any more children, you should not have a mechanical valve and instead opt for tissue since women cannot be on Coumadin while pregnant. (By the way, please don't let my experience scare you! Extremely early tissue valve failure is extremely rare! Still, tissue valves, considering that at 35 you are still young, will need to be replaced eventually. With the way medical technology is going, if you were to get a tissue valve, you might very likely have a super-minimally invasive surgery for both your first surgery and eventual replacement! Some of our fellow HV Ambassadors can educate you about TAVR).
It is true that bicuspid aortic valve is hereditary, but while you are wise for wanting to have your daughter tested, you may want to wait a while until she's a bit older and can process/understand everything. Speak with her pediatrician to assess your daughter's risks, etc.
In the meantime, feel free to unload here. We are all here for you, and we wish you the best! Try to enjoy the holiday season, ask us anything to help put your mind at ease.
To Heart and Soul Health,