Resonance19
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Resonance19, November 29,  2018  8:05am EST

Feeling Hopeless

Hello everyone. I am here because in the interim of trying to get appointments and be seen and heard by doctors, I am losing hope and becoming more and more afraid. I am here because this is the one place where maybe I can find those who have actually been through what I am going through and can give me some hope. 

I'm a 22 year old female and I was diagnosed with mitral valve prolapse with mitral regurgitation when I was 19. My gp heard a murmur with the stethoscope and had me go for an ecg. I was told at the time that i'd never have to worry about it again, unless i developed symptoms that altered my quality of life. As the next few years panned out i began to develop worse and worse symptoms. Today they are nearly unbearable and have effected my ability to work, sleep, and function normally. I struggle with anxiety and depression (my anxiety mostly cropping up a few years ago as a result of my uncomfortable heart symptoms) and one thing that is very hard for me is making or answering phone calls, so getting doctor's appointments is an ordeal. I finally went back to a cardiologist (but a new one this time) a few weeks ago. The very first thing he said when he crossed the threshold was "you're too young to be here!" Lord knows i've heard that one too many times... I told him how I've begun to have so many ectopic beats that they keep me awake at night at times, and that sometimes i'll get particularly "loud" ones which make me feel faint. I've also developed worsening migraines slowly over time. I can't tolerate any exercise at all anymore, not even jogging from my front door to my car to grab my jacket or something simple like that. At work, I had to lift a bag of flour onto a cart to take it to the bakery next door, a task which has never been difficult before, and i nearly passed out. I had tons of ectopic beats and had to sit down and drink water. I felt nauseous for a while after that. Despite telling my doctor all this he said to me "well, you had an echocardiogram and a stress echo 2.5 years ago so we don't need to do another." He sent me on my way with a 14 day heart monitor, which is better than nothing, but isn't going to look at the structure of my heart to see if my regurgitation or valve has gotten worse. Ive had similar treatments from every doctor i've seen for years now. It's epecially hard because I get emotional and i feel i get labeled as hysterical woman when I tear up. But i'm fed up! and I AM scared, but that doesn't mean i've materialized all these symptoms from anxiety alone! When i had severe panic disorder years back, I never had symptoms like this. I've come such a long way in the mental health department (anxiety wise anyway) and my physical symptoms have only gotten WORSE. Still, i am disregarded time after time because i'm a young women who doesn't belong in a heart clinic! I mentioned to my GP before that I had an eating disorder in adolescence which i feel like could have damaged my heart. I probably was born with the MVP but perhaps it got worse because of the damage i did to my body. During that time i lost my menstrual period for 8 months, and I was exercising a lot. But she appeared to brush that off too. At this point... I know it sounds grim but it feels like i'll end up as a statistic. It feels like it is getting worse and I'll have to drop dead or at least unconscious before they will look harder, let alone treat me. Can anyone relate to my situation, offer advice, or just some encouraging words? My parents are of the mind that despite being diagnosed with mitral regurgitation i've caused all this myself with my brain alone. They don't believe anything is wrong and will not be advocators for me. I feel so alone.

6 Replies
  • AHAASAKatie
    AHAASAKatie, November 29,  2018  8:30am EST

    I am so sorry that you are having to experience this! I know it must be hard. What is the chance that you could get a second opinion, sometimes a fresh pair of eyes can really help a situation? Thanks Katie

  • Resonance19
    Resonance19, November 29,  2018  8:37am EST

    I believe this cardiologist is the only one in my doctor's network but maybe I can go to another one. I have such a hard time making appointments thouhg... and it took so long to get this one.. so i feel very pessimistic about it.

  • AmbassadorC
    AmbassadorC, November 29,  2018  8:39am EST
    symptom tracker.pdf (7).

    Good morning and welcome to the support network. You have most definitely come to the right place as there is a tough community of heart warriors here that can indeed relate to your feelings. I am one of them that can relate to your feelings of being so young and “alone” when you were diagnosed. I too was told at a routine physical that I had a heart murmur. That said, I was taken back by what that meant as I was a healthy young female and couldn’t understand why I had this. In an abundance of caution, I was sent to a cardiologist who performed an echo which revealed MVP. While I was told that I can begin taking beta blockers to alleviate the symptoms of a racing heart beat that I did not attribute to this diagnosis, I was not comfortable with that general prescription. I then sought a second opinion. That began a period of yearly testing of echos and stress tests with a watch and wait diagnosis. I must say that if I did not keep up with recommended yearly or sometimes biyearly testing, the leaking valve that I  developed would not have been able to be repaired. I became symptomatic within 2 short years and like you, became short of breath, light headed and was constantly fatigued. 

    The moral of my journey is that you must be your own advocate. I would seek a second or third opinion with the results of your most recent echos in hand. There is a wonderful valve education center that can point you to resources. That said, I’m attaching a symptom tracker that I recommend you start keeping now. This will be a tremendous aid when starting a dialogue with your cardiologist. You need to seek medical attention and not think that this is all anxiety related. Continue to keep fighting your way through to get into see a cardiologist that will listen to you and your symptoms. 

    Of course, you can always reach out to us as well as we understand your journey. We welcome you with heart❣️

  • AmbassadorC
    AmbassadorC, November 29,  2018  8:42am EST

    Heart valve education   Here is the link to the heart valve resource page. 

  • Suzette
    Suzette, November 29,  2018  9:08pm EST

    Hello!

    I am new here but definitely understand your situation. I'm 45, but I'm short (4'-11") so people tend to think I'm younger because of my height. So I absolutely can relate with the "you're too young" comments.

    I am very lucky because when one cardiologist simply said, "I just think you're out shape", I was able to go to another one who was my father's cardiologist years ago. He knew my family history and he is extremely caring so he really listened and took me seriously.

    He was the only doctor who said, "wow! That is a loud murmur!" No other doctor even mentioned a murmur.

    Do you have a primary care doctor you can go to? Or even look for a new one that can recommend a cardiologist? There are many doctors that you can schedule appointments online, so you don't even need to call.

    Google as much as possible for a new doctor. Go on hospital websites because you can search physicians there too & even see what insurance they accept.

    Don't give up till you find someone you trust. If you are willing to share where you live, someone here may be able to recommend someone.

    Always know you have support and that you are not alone 💖

     

  • JulesRizzo
    JulesRizzo, November 30,  2018  10:41am EST

    Hey, I hope your receiving support. I'm a 33 year old male whos was born with congenital heart disease. I've had 2 open heart surgeries, 3 pacemakers installed and valve replacement surgery. I've felt every emotion up and down the emotion spectrum and continue to push myself daily. It's the grit in me that keeps me going and if you need to pull that out of you to clear your head space, I can be a good advocate/conversationalist for you.

    Stay strong and know you got me for support!

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