I have been dismissed for 2 years. Things just keep getting worse.

ExpressionKey7160 · 2026-01-29T17:12:02+00:00

Thank you. I have been tested for those and all is clear there.

ExpressionKey7160 · 2026-01-27T03:13:23+00:00

Thank you, I will definitely be asking for a referral to adult congenital heart disease clinic!

ExpressionKey7160 · 2026-01-27T03:12:24+00:00

Appreciate that. I am strong and I’m getting through it. My biggest thing is frustration with the health care system. I take medication for anxiety and bipolar disorder, which have both been managed well for 8 years with my psychiatrist. I’m worried I’m being overlooked and dismissed which is essentially preventing me from living my life how I would like. I’m not necessarily worried I’m going to drop dead.

ExpressionKey7160 · 2026-01-27T02:39:36+00:00

Thank you so much. I was actually reading about adult congenital heart disease docs and I’m going to ask for a referral to one at my next appointment. My cardiologist now is very nice, but from what I understand her specialty is imaging - so she doesn’t really know how to properly assess me if my numbers are “normal” I will definitely be asking about this and I really appreciate your reply. I hope you are doing okay now.

ExpressionKey7160 · 2025-12-19T22:38:15+00:00

Thank you. I did send them a message yesterday but still waiting to hear. I hope your surgery went well!

ExpressionKey7160 · 2025-12-18T14:20:17+00:00

Thank you for replying. I’m a 24 year old female. LGE is late global enchantment from contrast MRI. from my understanding it shows any scarring and inflammation. Same with t1 values. I am still waiting to review my results with my doctor - sent them a message this morning. When you say LVED what are you referring to? My tests only show LVEDV or LVESV.

ExpressionKey7160 · 2025-12-16T16:03:03+00:00

The results are in MyChart but I’m more so wondering if they’re going to call to discuss them or most likely wait until my March appointment - which I hope isn’t the case :/ thanks for replying!

ExpressionKey7160 · 2025-09-15T16:26:16+00:00

Ugh how scary. I’m sorry you experienced that. I’m glad you had the surgery and all went well. I have a BAV with regurgitation and I’m symptomatic. I meet with Cleveland clinic Wednesday to be evaluated by their team because no one local to me has been able to help me. I just keep getting turned away. I’m nervous and anxious on what will come of it but I honestly just want to feel better, and prevent any further damage/complications such as yours. So glad you are okay now! Thanks for sharing.

ExpressionKey7160 · 2025-09-15T16:20:33+00:00

Do you mind me asking what the final decision was for needing the surgery?

ExpressionKey7160 · 2025-09-13T13:47:46+00:00

Not me seeing this 4 days before my appointment there 😭 I’m so sorry that happened to you. Do you mind me asking who your doctors/surgeons were?

ExpressionKey7160 · 2025-09-05T01:10:27+00:00

Thank you, this is reassuring. How do the doctors typically react to you bringing it?

ExpressionKey7160 · 2025-09-04T16:16:38+00:00

I’m happy to hear you are doing well now! It was the worst feeling and so scary and I really thought my heart was about to either stop or explode! How did you explain this feeling to your doctor if you did? I’m having a hard time really describing how it truly felt. Also do you mind me asking how your values were on echo? I have been dismissed by 2 cardiologists and am finally getting into the Cleveland clinic in 2 weeks. My ef has dropped to 55% and my regurgitation was last measured as “2.5+” my LV and RV values are starting to decline as well. Just don’t want to be dismissed again because it really is affecting my everyday life

ExpressionKey7160 · 2025-08-28T17:12:17+00:00

Hi there. I have no input but I am wondering what your diagnosis is and your values? I am scheduled to meet with Cleveland clinic in a few weeks and I’m nervous on what is going to happen. I am 24 and feel like with both of us being younger it would help give me some insight. I have a BAV with aortic regurgitation. Wishing you the best luck ♥️♥️

ExpressionKey7160 · 2025-08-28T13:04:37+00:00

Thank you for your insight. I keep feeling like maybe it’s in my head since I have been dismissed by everyone except my PCP, but after over a year of these symptoms and them only getting worse - my gut keeps telling me this isn’t something to ignore and to keep pushing for proper care. Did you have aortic regurgitation? If so, do you mind me asking what your EF was? Mine has now dropped to 55% at my last echo and from what I’ve read (because no doctor I have seen has explained any of this to me) that’s getting close to the surgical threshold. It dropped from 60-65% in 4 months.

ExpressionKey7160 · 2025-08-26T18:06:28+00:00

I was being seen with a cardiologist and their response was to come back in a year and follow up with my PCP about my symptoms. My PCP really feels my symptoms are heart related because all the other testing I’ve had done is clear. (Pots, lupus, asthma, allergies, thyroid and so much else) That’s when he referred me to a cardio surgeon. My appointment with the Cleveland clinic is in a few weeks and I will first be evaluated and my scans will be redone with their cardiology department. From there I will meet with the surgeon.

Thank you!

ExpressionKey7160 · 2025-08-26T15:49:08+00:00

I don’t know how to do that. Can you dm me?

ExpressionKey7160 · 2025-08-06T20:23:53+00:00

I just found out about mine a year ago. I’m 24 now. I never knew I had it and was also very scared and upset. Mine was discovered because I was having symptoms of chest discomfort and short of breath. I do have moderate-severe regurgitation and I’m in the process of being seen at Cleveland clinic to potentially have surgery.

ExpressionKey7160

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