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Anxiety about Recent Cardiologist Visits
I'm 35 years old and was born with a coarctation of my aorta that was repaired when I was 6 months old. I've been going through my annual appointments lately and have done an echo, a CTA, and even did my 10-year brain MRA for aneurysms. And I have to admit after all the tests I'm a little shook and am anxious and it's causing me a lot of stress. The basic gist of my results are:
Brain MRA came back negative which is good.
Mild to Moderate Aortic Insufficiency - The doctor said at this point in time it's of no significance and is more on the mild side.
Left Ventricular Hypertrophy (doc said he wasn't concerned about this as it was likely caused by "athlete's heart", I've played competitive sports since I was 6).
My echo said my ascending aorta is dilated at 3.9. They did a CTA of my heart and it measured at 3.4cm, but the doctor is saying the echo is more accurate. I asked for a second opinion and they agreed the echo is correct.
And I was told for the first time that two of my leaflets in my aorta are fused together (which I looked up and it says that it is a BAV, pretty frightening to hear this for the first time at 35).
The doc said that my life expectancy should be the same as about anyone else and insinuated that I wouldn't/shouldn't have to worry about another procedure until I'm in my 70's. (He said, "if you need to have another procedure when you're 70 or 75, then...")
What has me shook is:
The mild to moderate insufficiency because he wants to monitor that over time.
The BAV because I've never heard I've had that and he wants to monitor to make sure the leaflets don't get thicker.
The dilation of the ascending aorta being at 3.9 which calls for repeat echos every year.
These results are all causing me a lot of anxiety and stress because this is the first time I've really paid attention to my heart health (I wasn't as good about seeing the doctor in my younger years) I'm afraid of things getting worse and possibly needing another procedure later in life.
How should I feel about these results as a 35-year-old? Should I be as anxious and stressed as I am?
AHAASAKatie, October 6, 2020 9:41am EST
I am so sorry that you are having to manage all of this. And it seems completely reasonable that you are distressed. However, you have taken all the steps, gotten a second opinion, and been an excellent advocate for your own health. Would you be willing or interested in working with a therapist to help manage some of the anxiety and fear? That might be a good way to help you find some peace with your situation. The waiting can be really and finding good coping skills are a must.
Please know that we are here for you, to listen and support as needed.
AmbassadorDN, October 6, 2020 10:52am EST
You have every right to be concerned as this is a lot to digest all at once. I also was born with a congenital heart defect, so I'll briefly share my experience (hopefully to put things in perspective for you).
I was born with a defective mitral valve as well as defective papillary muscle. I went to a pediatric cardiologist until I was 21 and "graduated" from his care, and then I didn't see a cardiologist again until a worrisome arrhythmia episode occured when I was 23. Basically, all my life I was told I would need surgery to repair or replace my valve, but not until I would be about 60. However, I was 30 years old when my valve started to fail. I never really thought about being a "heart patient" or even a "CHD-er" until 2006 when all this started happening. I ended up having three heart valve surgeries between 2006-2017. It's scary stuff, I know, but even my cardiologists gave me a ballpark projection of when I would need surgery, and it happened long before--decades--my doctors thought I woud need my valve defect addressed.
I'm not sharing all this to scare you; in fact, side note: I'm doing really well now, all things considered. There is a possibility that you may need surgery sooner than later, and that's OK. As my doctor said (actually my surgeon): "It's better to address the problem while you're still healthy than to wait until your heart becomes comprimised." The best thing you can do for yourself is to educate yourself about your condition, keep up with your cardiologist visits, and take good care of your health in the meantime. Talk with your doctor about exercise and maintaining your health. And as Katie suggests, if you are open to it, working with a therapist can be essential to help you manage your fears and anxieties.
Further, research ACHD clinics near you. I don't know if you see an Adult Congenital Heart Defect cardiologist, but if you are not, you should. Most general cardiologists are trained to treat acquired heart disease in the aging population, but ACHD cardiologists are specialized and know how to treat all CHDs in adults. Type in "ACHD Clinics" in your browser to find a clinic near you. A good ACHD cardiologist will guide you and help put your mind at ease about your BAV.
In the meantime, if you have any other questions or concerns, feel free to reach out here. We have a great community of members who are willing to share their insights!
To Heart and Soul Health,
TomBroussard, October 6, 2020 11:01am EST
Heart issues at any age are always stressful! The good news is that you are (very) young (in heart years!)...and that is good. Staying on top of your heart factors every year is also very good.
Anixiety comes with these kinds of issues all the time...but a good doctor, a second (and sometimes a third) opinion plus regular annual tests and results every year helps a lot too. I drive two hours every year to see my TAVR surgeon (and get my tests done, ECHO, EKG, etc,). My *** doctor works ten minutes away and more than once, he has wondered (out loud) why I go so far when I could get my tests done right here.
I have had to explain to my *** (and he still doesn't "get it") that a relationship build over time provides more compassionate understanding than the one who talks too fast with a set of opinions without the time needed to discuss the pros and cons for any patients who are really just "talking outloud" to help relieve the stress that comes from the possible (and not necessarily bad) issues in the future.
It has been said many times, we (the patients) are our best advocates...and it sounds like you are already your best advocate in your corner! Take care and good luck as you work through the issues ahead... Tom B
JamesPL, October 6, 2020 7:55pm EST
Your concerns are certainly understandable. Anyone would have the same feelngs after some of the things your doctor has stated about his concerns. I myself am a bit of a worry wart so I get it. That said, try not to let it consume you. Instead, concentrate on all the things you can do to improve your health (see my latest post at the top of this forum). If you do that, take comfort that you are doing all you can to keep yourself healthy and that you can't concern yourself too much over those things beyond your control. I know this sounds simple but if you're doing the best you can, that gives you the greatest control over your health.
You should also understand that technology has consistently given us advanced improvements to heart health care. We can do things today that were unthinkable 30 years ago. Who knows what we'll be able to do 30 years from now?
Wishing you al the best!
JeffB, October 10, 2020 12:44pm EST
Hey, I came across your post and wanted to chime in after the previous comments you got which are full of great info. All I wanted to say is that I felt similar anxiety after my heart attack. I still do from time to time. The thing that helps me is to try and not give into it. Just let it happen and flow away from me like watter. I try to think of anxiety as a helpful emotion. One that keeps me on my toes but I ask it to leave so I can get back to living my life. Also, I know all too well the temptation for re-examining all of my past lifetyle choices. That just leads to negative self talk and shame though. Instead, take your power back and choose different paths today and tomorrow one day at a time. Ad the days become weeks and then months you will invariably feel better as you get more info about your situation. Trust your Dr's and know that you are doing the very best you can right now. Be proud of yourself for that.
Best of luck,
jcowin, October 13, 2020 4:38pm EST
It is completely normal to feel anxious and stressed. It is especially understandable as you get older and take over your own care. Many things that our parents were told when we were kids, we never really understood or worried about, until we are in charge of our own care. News like this can be so overwhelming. It is important to ask your doctors as many questions as it takes until you feel like you understand what all of those numbers/diagnoses mean. Getting a second opinion was a great idea. Sometimes that is necessary and for peace of mind. It is stressful, thinking everyday about what will happen in the future. I am just as guilty of it. I do have the same anxiety and stress. Mine is related to a different part of my heart journey/experience, but nonetheless, I completely understand how you are feeling. Everyday those numbers and the voice of your cardiologist is in your heard saying those words of your results and that surgery could be in your very distant future. The good news, you are stable and now on top of your care. The best thing to do is continue to follow up with your cardiologist. Depending on the hospital you are at, the patient portals are great for asking those questions that are still concerning you and that you need further clarification on. You do not have to wait until your next appointment to get some of those questions answered. It might help lessen that stress and anxiety, even just a little. It takes time to process what you have been faced with, but time will help with the acceptance. There will be that day when you say, “I got this!” and I have no doubt that will come, it just takes time.
I hope that this helps you in some way, know that what you are feeling is normal and that you are most definitely not alone!
melliebelly3, January 22, 2021 4:41pm EST
Hi i am Melanie i have tetrology of fellot with pulmonary valve insufficiency. I think it is very normal for us to be anxious over news when stuff is going on with the heart. I do this as well my best advice is to pay attention to any symptoms you have to you're dr. You are you're best advocate.