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New and scared
I am new, and unsure of where to start. I am a 36 year old mom of 2, a wife and a teacher. I was diagnosed with hypertension about 6 years ago but have been unsuccessful with getting it regulated correctly. About 3-4 weeks ago I started having chest discomfort and then trouble breathing when I climbed stairs or did extensive exercise. I have now been diagnosed with BAV. My Dr. is amazing and responding quickly, but I am scared to death. Words like halter monitor, TEE, valve replacement and beta blockers weren't what I expected at 36. I guess I am just needing some first hand experiences to prepare me for the road I'm heading down. Much appreciation in advance.
AHAASAKatie, November 17, 2020 9:22am EST
Good morning, I am so sorry you are having to manage all of this, it is a great deal. I can share what we have on heart valve conditions, treatments, and what to expect after surgery with you. We also have a very active group of heart valve ambassadors who will, I am sure, chime in over the next few days and share their experiences as well.
Please know that we are here for you now, and as your treatment progresses.
KimberlyG, November 17, 2020 9:55am EST
Good morning.... We ( Heart Valve Ambassadors) are here to support you and every member of our community.
Sharing how I cope with a mechanical heart valve in my heart and a pacemaker. ( 11 year heart valve disease survivor: I'm so grateful).
a) I rely on my faith in God
b) I reach out to my cardiologist and medical team, re; any concerns or questions I may have re: my recovery
c) I keep my family, neighbors, friends, church community informed on the days when I'm not feeling 100%.
d) I follow my doctor's advice re;maintaining a healthy lifestyle
e) I also receive valuable information re; heart valve disease from the American Heart Assocaiton's website
Please keep us informed with any updates.
If you have any additional quesitons re: my recovery: feel free to send a message to email@example.com .
I pray good health for you today and always,
TomBroussard, November 17, 2020 11:23am EST
Good morning...thanks for your note! It is always educational for all of us to hear from someone else's perspective. Learning from you helps all of us learn by sharing what all of us have collectively experienced. Thanks for sharing...even if at the beginning of a long journey.
I thought that there was nothing wrong with my body ("young", fit, good exercise, good diet, etc.) until 9 years ago. That is when my journey started. Open heart surgery, valve replacement, stroke, aphasia (loss of language), renal stenosis, TIA's and TAVR to name a few.
The good news is that our medicine does an amazing job of helping our body and brain recover as we get back to (almost) "perfect" health (I just finshed walking 10,000 miles since my journey began). Recovery takes time for most treatment but the body is usually up for it...given the motivation needed.
Please continue to study your body signals, learn your new medical lexicon, learn from (many of) your doctors and nurses...and learn from your new friends in the AHA/ASA community! My email is firstname.lastname@example.org. Thanks again for reaching out to all of us...take care and stay in touch...Tom B
AmbassadorB, November 17, 2020 8:18pm EST
Being new in your current heart situation, and SCARED- certainly identif
ies you as a "Qualified Player". One of us. First: Being scared is a usual and - yes - a healthy status to be in at this point in your experience. The trick is to utilize this energy!. Make sure that you have a plan and that it is known to your cardiologist or first team cardo physicians. All appropriate action and timelines are identified, (?) As changes occur, the medical team is on board with you! Your family and particuarly the two youngsters are most important overall - right now. Keep them in the loop and active members of your team.
You're doing the right thing! You're active and proceding on a winning program! We're all with you, supportive and confident of your success!
Ambassador B (Bernie)
AmbassadorR, November 18, 2020 11:05pm EST
I think your initial reaction is a lot like of of ours. Lots of fear and shock. However with technology today the future for heart disease patients is good. I was diagnosed with a bad aortic valve about six years ago, but after surgery I recovered well. You're smart to be on top of this by taking the necessary steps to get better. The road you may be heading down is not as bleak as you may think it is. As time passes you'll learn more about heart disease and what is being done to help people get better. This will be reassuring. After my surgery I became stronger than I had been in many years. The key will be to stay on top of your heart issues. You may be surprised to see that your life may not change much at all. Don't hesitate to ask your doctors, and us here, any questions you may have. The more info you have the better you will feel.
AmbassadorC, November 21, 2020 7:31am EST
Welcome to the support network, Bemberton84. You are among a community of heart warriors who will be the strength for the journey ahead. We welcome you with ❤️. My fellow ambassadors have provided very encouraging words. My journey with heart valve disease involves the mitral valve. I had a leaking mitral valve that was repaired via open heart surgery. I am very familiar with the Tee tests, and no stranger to a holter monitor and even betas. What I would advocate, is that you continue to follow your medical professionals guidance. It is completely natural to be afraid of the unknown. Having said that, and going through these events myself, it's imparitive that with treatment timed tight, you will not have to be destined to a life of limitations. The key is to stay diligent to testing so that you can be monitored. The one key takeaway that I learned from my journey, is that you MUST be your own advocate. You are taking those steps now by communicating and getting proper testing, if something doesn't feel right, speak up and don't be afraid to advocate on your own behalf.
Feel free to each out to us if you have any other questions or concerns. We are 'hear' for you.
Ambassador C ❤️
krb81, November 30, 2020 5:57pm EST
I'm sorry to hear about this recent news. I'm a 36-year-old father of two. I was fortunate to get diagnosed with my BAV when I was an infant. Five weeks ago, I had open heart surgery to repair an aortic aneurysm and repair the existing valve. If you're symptomatic from your BAV, it sounds like you might be heading in the direction of the surgical solution. But that's what it is - a solution. My valve is functioning better than it ever has, even if it's still getting used to its new structure. Time will heal the effects of the surgery. Last week, I got back on the Peloton. I'm not where I was pre-surgery, but I know I'm going to get back there in the coming months. 1% of the population has a BAV. Many don't know about their condition until it's too late. You've caught it. Earlier or now doesn't matter, you've caught it early enough and you're going to get through this. Please keep us posted on your progress!
AmbassadorDN, December 2, 2020 6:18pm EST
You have received much wonderful advice and support here already from our awesome Ambassadors! I don't have much else to add other than I'm also a teacher and dealing with a congenital heart defect stinks, truly. My heart goes out to you, no pun intended. I was born with a defective mitral valve and have had three heart valve surgeries.
As a teacher, I can advise you not to worry about having to take time off to have valve surgery, especially if you need surgery before the school year ends. Just make sure, of course, to discuss your surgery with your principal in advance (as well as any department chair(s)) and HR so you can make arrangements to get a sub if need be. Also, if you have disability insurance through your school district, file your claim prior to surgery. I'm not sure how things may work in your district, but we have our sick days plus 100 at docked-pay. Having the disability insurance helped defray the costs of bills after my surgery when I ended up being out longer than expected.
Recovering from valve surgery varies from person to person, and in my experience, my recovery times were different with each surgery. I had my last surgery in November 2017 and expected to return at the end of the semester in January, but I ended up being out for the entire school year. Plan for any changes in your recovery status and anticipate that you may be away longer from your school than you may intend to be. Your students are important, but your health is more important. As my principal told me before my first surgery, "You're no good to anyone if you don't take care of you first."
We are all here for you, so feel free to ask away!
To Heart and Soul Health,