BlueRose
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BlueRose, September 25,  2018  8:39am EST

Nobody seems to understand, not even the doctors!

I was born with CHD, Aortic prolapse & regurdutaion. Back in 1967 they called it a heart mummer. As a child when my heart would race, and I would get dizzy and stay exhausted, I was told I was hyperventalating. As an adult, my mother still tells me "to breath"! My response, through shortness of breath is "How when I can't get enough air in?" In the past 15 years I've been made fun of by the emergency room staff, told I am having "conversion disorder", had many procedures that were unnecessary being told I had mucle spams, gas, hiatial hernias, and arthuritis in my sternum.

A month ago things esculated. I had such pressure in my chest to the point I was hurting in my shoulder blade, cold sweats, short of breath. I was carried to the emergency room one more time. The hospitalist there, who 6 months ago had told me I did not have Aortic regurd or prolapse, checked me out saying something wasn't right with my heart, so he admitted me for observation. Another hospitalist told me before I was discharged that my echo was "CLEAR"! Talk about frustrated!! Are all doctors this dumb that they don't listen to heart patiens, even when the patient tells them they are under the care of a cardiologist

I am tired of being tired. I can't even enjoy the grandchildren any more.

Sure, I have family and friends that I can talk too, but they don't seem to understand. They simply nod their heads and still tell me I need to be more active. I bite my tongue and keep going as much as I can, really wanting to scream at the top of my lungs, "Don't you think I would if I could? Don't you think I want to be outside enjoying this time in my life fishing and playing with my grandchildren? Don't you think I would love to drive myself to town?"

Are these normanl feelings? Can somebody please just talk to me and let me know something, anything, so I know what I am up against.

Thanks for listening to me rant and rave.

10 Replies
  • AHAASAKatie
    AHAASAKatie, September 25,  2018  8:52am EST

    I am so sorry that you are having to experience this! Have you been able to see a  cardiologist or has it always been ER doctors and hospitalists? Best Katie 

  • AmbassadorC
    AmbassadorC, September 25,  2018  9:13am EST
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    Good morning Blue Rose and welcome to the support network. We are so happy that you have found us and shared your frustrations. Know that you are not alone in your journey. Heart valve disease is real and often times under diagnosed. Katie raised a very good question, are you currently working with a cardiologist? What area do you live in in terms of a metro city or more of a rural community? You may need to ask your underlying GP for a referral but likely you should not delay in seeking an evaluation. Allot of symptoms of HVD are often confused by the aging process or every day stresses of life. While it sounds like you have tried conveying your symptoms to the clinicians, you must continue to be your own advocate and seek answers. 

    We are here for you and will be your strength for the journey ahead❣️ Please continue to reach out to us. 

    With heart, 

    Ambassador C 

  • KimberlyG
    KimberlyG, September 25,  2018  9:24am EST
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    Hello.  At the beginning of my heart journey(2009), I struggled with my recovery. It was hard for me to explain to my family & friends , how I felt( emotionally)  after my open heart & pace maker surgeries.

    I began praying , reading daily devotionals &  writing in my journal.I continue to keep the lines of communication open at all times with my family , friends and medical team.

    Please feel freet o review the article: "Coping with Feelings"  ( click the links below) and visit my wesbite.

    http://www.heart.org/en/health-topics/cardiac-rehab/taking-care-of-yourself/coping-with-feelings

    http://kagoodloe.wixsite.com/heartofgold

    I  wish you all the best

    Have a beautiful day

  • AmbassadorDN
    AmbassadorDN, September 25,  2018  5:00pm EST

    Welcome, BlueRose!

    I totally understand your frustrations. You didn't say if you were male or female, and the reason I bring this up is that women are often looked over by doctors when it comes to heart disease, even when it is CHD we are dealing with. Similar to you, my CHD is mitral valve prolapse with regurgitation and defective papillary muscle. When my mitral valve failed in 2006, and I was rushed to the local ER from work, the attending ER doctor told me quite bluntly that I was being a "hypochondriac" and that I was just basically overreacting. A lot of it, I believe, is that I'm female and I couldn't possibly be having heart disease symptoms. It was only after the ER doctor spoke with my cardiologist that he changed his tune with me.

    You say that you are under the care of your cardiologist. Have you spoken with him/her about your treatment? Is there any timeline as far as you possibly needing surgery? I'm no doctor myself, but you seem symptomatic of valve failure. What you have been experiencing is pretty much what I experienced before my heart valve surgeries. Also, if you find yourself in the ER again any time soon, demand that the ER doctor calls your cardiologist. 

     

    Finally. I understand how you want to be able to do more but your body won't let you. Kimberly and Christine, our fellow Heart Valve Ambassadors, have given you good advice. We are all here for you, so feel free to rant and rave as much as you need to!

    To Heart and Soul Health,

    Debra (Ambassador DN)

  • AmbassadorMR
    AmbassadorMR, September 26,  2018  12:42pm EST

    BlueRose,

    The other Heart Valve Ambassadors have given you excellent support, infortmation and encouragement. I wish to add my own to the mix since all of us who have lived with heart disease and surgical intervention can share your frustrations, fears and concerns with both the condition and its treatment. If you have been diagnosed with valve regurgitation in the past, then it is essential that any new or worsening symptoms be thoroughly investigated and diagnosed by a cardiologist. I know you indicated that you are under the care of a cardiologist but if you aren't getting the treatment or answers that you need please get a second opinion from another cardiologist immediately. The symptoms that you are describing are not to be brushed off or dismissed. They are serious and need to be properly diagnosed and treated.

    If you live in a major metro area I strongly recommend finding the nearest center of excellence heart hospital and seek a second opinion there. If you need resources on finding a center of excellence just let us know and we will be glad to point you to web sites that can assist. We all want the best for you so please let us know how you are doing and what next steps you are taking.

    Yours In Heart Health,

    AmbassadorMR

  • BlueRose
    BlueRose, September 26,  2018  11:23pm EST

    Thank you all for your help and support. 

    I am a female, and yes, most of the time I am looked over in er.

    I do have a cardiologist and have repeatedly asked the various er personell to contact him. However, after this last er visit/hospital stay, I am openly looking for a new cardiologist. When I got home I called to see if I could get in to see him and explained that I had just got out of the hospital, I was told it would be December or after the first of the year before I could get in.

    I live in a very rural area in NC. The closest metro is over 100 miles away. So, yes, it would be wonderful to be pointed to web sites that can assist in this.

    Again, thank you.

  • AmbassadorDN
    AmbassadorDN, September 26,  2018  11:34pm EST

    Hi, BlueRose,

    Your best bet is to be followed by a cardiologist who specializes in treating adults with CHD. You can type in “adult CHD doctors in North Carolina” to help navigate your search. ACHD cardios are few and far between, even in Southern California where I live, and often located in major metropolitan areas. There are sites that can help you find a cardio who is best able to treat your unique case. You may have to do some investigating to find the right fit for you. 

    Keep us posted on how things are going and keep being your best advocate!

    To Heart and Soul Health,

    Debra N

  • Teka18
    Teka18, October 2,  2018  6:16pm EST

    Hi,

    I had aortic valve replacement at the end of September. Can anyone tell me if there are any in-person support groups for BAV paitents. I have read so many posts here and other places, but I would just like to be able to sit down with other people in a room and talk. I live in Orange County

    I will be going back to work soon and wont have all day to read. It would be nice to sit with others who have had open heart surgery. I think the connection would be helpful

    Thanks

  • AmbassadorC
    AmbassadorC, October 2,  2018  8:22pm EST

    Teka18, 

    Welcome to the support network. We are happy that you have found support through posts and articles to assist you thus far in your journey. I can relate to when I had my surgery, similiarily, I wanted a person I could speak to 1:1 my age, who had been there and done that, as the support network was not known to me at the time. That said, I found that during my phase of cardiac rehab, I was able to relate to patients in the same boat as I was. In addition, I was very fortunate to have an excellent cardiac rehab staff that was super helpful with suggestions for when I left the clinic and eventually transitioned back to work. My suggestion is that you start there. If you have not gone to cardiac rehab, I would still reach out to them to see if they have any local support groups such as Mended Hearts that you might be able to join. Of course, we are always here to support you as well as you continue on  your journey to heart health. 

    Keep on fighting with heart, 

    Ambassador C  

  • KatMarie
    KatMarie, October 7,  2018  2:40pm EST

    Hello... so sorry you're not feeling well.  Imho, if you're having regurgitation of any valves, then these valves need to be replaced.  My 40 year old daughter had a mechanical mitral valve implant 35 years ago. But, she is now in chf . But, her valve is still working well.  You need a cardiologist who will do tests to determine your prognosis,  asap.

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