Catie
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Catie, June 8,  2021  8:24pm EST

Had echo for prosthetic heart valve but new issue found - diastolic dysfunction

I had my first echos (stress and regular one) since the pandemic started last month and the follow-up appointment with my cardiologist was today. She's a newer cardiologist to me. I'd only seen her once before. I made a change because the previous doctor scared the daylights out of me about my tissue aortic valve. (In late 2019 he thought I'd need to have it replaced within a year and he'd announced this to me in a very unprofessional way.)

Anyway, today my newer cardiologist, who specializes in valves and echos, was encouraging about my heart valve still doing alright and holding up. But as we were walking out the door, she mentioned that something on the echo indicated that I should be sure and get more exercise. I checked when I got home and the report included Grade 2 ventricular diastolic dysfunction with elevated LA filling pressure. Some research leads me to believe this isn't a minor matter. She may have wanted to not freak me out because I've already shown myself to her as an anxious person on my first visit. I also had asked her a list of question and burned up time there. I see her again in six months which she anticipates would only be an office visit.  But this has felt kind of like dropping a **** on me, if this is a precursor to heart failure or falls within that category. I'm frightened.

4 Replies
  • AmbassadorDN
    AmbassadorDN, June 8,  2021  10:47pm EST

    Welcome, Catie!

    First, I want to say that I am glad that you advocated for yourself and found a new cardiologist since you were unsatisfied with your previous cardiologist. 
     

    However, if you are concerned about anything on your echo report, you should bring your concerns up sooner rather than later (your next appointment in six months). While it's good to be in the know and look up information that strikes you as alarming, please do avoid self-diagnosing. It can be easy to start Googling and get alarmed by what you discover. Always speak with your doctor so that you don't cause yourself any worry. Your doctor should be able to allay your concerns. Of note: Sometimes whoever reads the echo, whether it is your cardiologist or another cardiologist, impressions may be made based on the images that produce a certain conclusion. I have had several echoes over the past month (long story as to why), and although most of the reports were accurate, some results varied depending on the physician who read the echo. I noted that one item back in early May suggested that I had an aneurysm inside my heart (which my doctor did not mention), so I asked my doctor and he said there was no aneurysm. The doctor who read my echo was not familiar with that fact that my heart is literally turned more to the left than a normal-positioned heart, so that is why the doctor though he saw an aneurysm. Frankly, echoes can produce different results; it depends on what is seen on that particular day. If your doctor is concerned about any image or result from the echo, your doctor should address that with you at your appointment/follow-up.
     

    In my experience, I have had three heart valve surgeries since 2006, and after my third valve surgery in 2017, I was diagnosed with diastolic dysfunction: HFpEF ( heart failure with preserved ejection fraction). My symptoms were marked by fluid retention (weight gain) in my abdomen and thighs, as well as shortness of breath both at rest and exertion. Although I still have HFpEF, my cardiologist is able to manage my condition with medication so that I am able to live as normal a life as possible. 
     

    If you are experiencing any troubling symptoms, keep a journal of the symptoms you are having: What you are doing at the time, what symptoms you are having (such as palpitations or shortness of breath), and share the information with your cardiologist. You may want to schedule another visit with your doctor soon to discuss your concerns; or, if possible, send your doctor a message through your patient portal if you are signed up for one with your cardiologist's office to get your concerns addressed quickly. 
     

    In the meantime, please feel free to ask any other questions you may have. I'm sure my fellow Ambassadors will be along soon to share their experiences and insights as well. 
     

    To Heart and Soul Health,

    Ambassador DN

  • Catie
    Catie, June 9,  2021  4:36am EST

    Thank you so, so much for your kind reply, Ambassador DN. And for generously sharing of your own story. I very much appreciate your taking the time and your kindness. Is more of your story posted anywhere? I would enjoy learning more about your journey.  Ah... It's not easy to search for people here, but I did find this post and will read.  Are your blogs gone now, AmbassadorDN? https://supportnetwork.heart.org/connect-with-people-like-me/rehab-recovery/rehab-and-recovery-heart/its-been-a-while-in-other-words-life-isnt-a-smooth-road/

    My current cardiologist reads/interprets her own echos--no one else is involved in this instance--and she states out loud and on her website that she is considered an expert in echocardiography. She did mention my changed condition, like casually right as she was walking me out the door of the office to the counter and advised that I start exercising. I wish we'd taken a little time on this. I can submit questions on the portal and/or call and request an additional appointment to discuss my concerns. I will reach out on the portal to start and if we need an appt, I'll get one. But at this time there's some shock re: Grade 2. It would've helped for it to have been discussed better before I left. It was only Grade 1 on echo in Jan 2020 and at that time she'd mentioned not to be alarmed since that's common as people age. 

     

  • AmbassadorDN
    AmbassadorDN, June 9,  2021  12:38pm EST

    Hi, Catie,

    It is my pleasure. We are all here for you to bounce questions off of, get insights, and more. To learn more about my story, you may visit my personal blog here: https://theheartvalvebuffet.weebly.com/ Please know that I write candidly, and that my views and opinions are in no way affiliated with the AHA or that my blog posts should be taken as medical advice. The posts are merely to share my experiences from a faith-based viewpoint. I will be posting another blog entry shortly.

    I'm glad that you are moving forward with reaching out to your cardiologist as soon as you can. Any questions or concerns you have regarding information should be addressed with your doctor. Sometimes, after meeting with my own cardiologist, I will have questions about what we discussed and can also post my questions through the patient portal so that my cardiologist or his nurse practitioner can answer those questions or concerns I have. While I am no medical professional and cannot answer why your cardiologist did not bring up the diastolic dysfunction with you in detail, I do know that DD can be part of the aging process and is sometimes not a reason to sound alarm, as you say your doctor had mentioned, unless the patient is having symptoms. Still, it is wise for you to ask your doctor about her impressions on the echo and why she sees your DD as a Grade 2.

    Again, do be on the lookout for any symptoms you may be experiencing that can be troublesome, such as shortness of breath, increased fatigue, weight gain, etc. and bring up those symptoms with your doctor if you have any or develop these symptoms later. You seem to be good about advocating for yourself, so do be sure to keep the lines of communication open with your cardiologist.

    If you have any other questions or concerns, be sure to ask. Our Support Network community is here for you!

    To Heart and Soul Health,

    Ambassador DN

     

  • Catie
    Catie, June 9,  2021  10:16pm EST

    AmbassadorDN, you've been very kind. Thank you for another heartfelt reply and for sharing the url to your blog. I look forward to reading more about your journey. 

    I appreciate your mentioning symptoms to be mindful about, should they arise. I completely understand and concur with your admonition to seek information directly from my healthcare professionals. The main reason I posted here was to not feel so alone learning of a new physical issue, esp. when I already have a complex health history. I struggle with anxiety in the best of times and anything new can feel overwhelming. I'm sure most anyone posting about heart issues well understands that, so this seemed like a good starting place to at least say, "Ack!! There's a new scary something."  :)  It will take a little time to wrap my head around it emotionally and I wanted to let the dust settle just a bit before submitting questions to my doctor.

    Again, thanks so much.

    Catie

     

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