Mended Hearts Open Forum

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  • 1.  Pulmonary Regurgitation Symptoms

    Posted 02-03-2023 17:57
    Hello fellow heart warriors!

    I'm reaching out to see if any of you have had symptoms for your leaky valves.  I know they say a leaky valve can be a sneaky valve so we might not notice it, but if you did, what did you feel?  

    I had total repair for Tetralogy of Fallot as a child in 1972.  I've been doing well for a long time now (I'm 56) and take meds for Atrial Flutter.  The docs have been watching my leaky pulmonary valve and last year's check up showed that it's borderline severe but I wasn't having any symptoms.  However, I think I'm starting to feel symptoms.  It's hard to explain but I feel a heaviness in my chest or light pressure (like my cat is lying on my chest) and sometimes I feel a twinge in my chest but no pain.  However, I don't feel winded or out of breath.  Thanks for your time.  I'm just trying to determine if I should wait for my check up in May.  My symptoms aren't that bothersome, but I don't want to overlook things either.  

    Gratefully,
    Tina 


  • 2.  RE: Pulmonary Regurgitation Symptoms

    Posted 02-04-2023 04:23
    Hi Tina,
    I am by no means a medical professional but PLEASE get yourself checked out immediately! I don’t want to be an alarmist but you may want to consider an emergency room NOW. Chest pain, heaviness, pressure... should never be ignored and if it turns out to nothing, peace of mind is a wonderful thing.

    Please write back when you know that you are OK and if you are interested, I will tell you about my experience when I ignored my symptoms in 2012.

    All the best,
    Jeff




  • 3.  RE: Pulmonary Regurgitation Symptoms

    Posted 02-04-2023 06:37
    Hi Tina,

    I don't know anything about leaky valves but, if you think you might be feeling even mild symptoms, you should call your cardiologist and ask whether you should come in for a checkup now rather than wait till May.

    Best of luck and keep us posted.

    Ira

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    Ira Reid
    Hoboken NJ
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  • 4.  RE: Pulmonary Regurgitation Symptoms

    Posted 02-04-2023 11:17
    Tina, I would not wait. Call the doctor and explain what you feel. Let
    them determine if you should see the doctor now or wait. Don't fool
    around.Better to be safe than sorry.


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  • 5.  RE: Pulmonary Regurgitation Symptoms

    Posted 02-04-2023 12:27
    Hi Tina,

    You could be asymptomatic, yet to air on the side of caution I would ask your cardiologist to schedule you for an echo. 

    -Terry
    Mitral Valve Repair 2010/2022 




    Original Message


  • 6.  RE: Pulmonary Regurgitation Symptoms

    Posted 02-04-2023 13:09
    Thanks Jeff, Ira, Maria & Terry for taking the time to read my post and for responding!  ��

    Thanks for the advice too.  I will definitely call my cardiologist to explain what I'm feeling.  Yes, better safe than sorry.  Jeff, if I felt a lot of pressure, I would definitely go to the ER.  But this is so subtle and I've felt it for a while now.  But I definitely feel it more often so I will call the doctor to inquire.  

    Thanks again for your help & concern,

    Tina 



    Original Message


  • 7.  RE: Pulmonary Regurgitation Symptoms

    Posted 02-06-2023 10:38
    I'm a TOF baby too and the pulmonary valve was a gradual decline but when I ended up with a sharp pain for an extended period it was time back in 2005 when I was 35. Yes, I agree with the others and it is time for you to get checked out asap. For me, I am waiting for a confirmed dated to replace my pulmonary valve and also receive a new tricuspid valve. Hoping that will happen in late March. All will turn out for you and keep us posted.

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    MARK Buttell
    CALEDONIA MN
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    Original Message


  • 8.  RE: Pulmonary Regurgitation Symptoms

    Posted 02-06-2023 12:33

    Hello Mark, fellow TOF baby!  I know there aren't many of us out there so it's wonderful to hear from you.  Thanks for sharing about your experience and symptoms.  I did call my cardiologist to get an echo scheduled sooner.  It sounds like you are onto your second pulmonary valve replacement?   I'm lucky to have made it this far without a replacement.  I think my husband is worried more then me about it.  I've had good doctors and experiences growing up around my TOF repair so I'm hoping the good experiences continue.  Thanks again for your input.  

    Gratefully,
    Tina 



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    Tina Marshall
    Berthoud CO
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    Original Message


  • 9.  RE: Pulmonary Regurgitation Symptoms

    Posted 02-05-2023 12:35
    Dear Tina, thanks for sharing your story and reaching out for advice.
    If I were you ( or if you were my husband) , I would be calling my cardiologist today and insist on a very soon appointment!
    Do not wait until May!
    Your symptoms might not necessarily mean anything is wrong, but it is better to be safe than sorry. Also the anxiety of waiting and worrying can also have negative effects on your health.
    Please let us know how you are doing

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655




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